Headaches aps and sle

[Sara_A]

I have both sle and aps and am on treatment to prevent headaches and also clopidogrel.

The problem I’m having is that when I get a headache/migraine ( which are gradually getting worse each time) that it’s totally wiping me out and I feel drained from it. I feel like I’m ‘on something’ like I’m spaced out!?

I also have occipital neuralgia which is worse at the moment too and I getting stabbing pain thru the top of my head and numbness and tingling over my head and down side of my face.

Does anyone else get this feeling of being spaced out after a headache/migraine ( even if I haven’t taken any naratriptan for the migraine as that can sometimes make me feel bit spaced). I’m pretty tolerant to medications as I’m on 30 tablets a day inc zomorph etc etc! So I know it’s not that and the only thing that’s changed recently is my steroid dose and mycophenolate had been increased as I’ve suffered a flare this last 6 wks and still off work from it.

Any ideas as I’m getting so drained so quickly and I also get the headache in the night or wake with it.

[baba]

If you post this on the APS site you might get more information.

ghic.world/

healthunlocked.com/hughes-s...

[Sara_A in reply to baba]

I know I was umming and ahhing which best to put it on! It’s a shame I couldn’t put it on bothas an option.

Thanku I will do that x

[AndrewT]

Dear Sara_A,

You say you had the Mycophenolate increased recently, presumably because you were 'Showing Signs', of a possible 'Flare'...am I right? These 'Spaced Out' feeling could, only could, be a sign especially if coupled with 'unusual' pain- perhaps worth considering, at least. I'm NOT trying to scare you Sara, really I'm not, It's just that reading you 'Post' makes me Wonder. If you don't see what, I'm Driving At, then re-read your own Post...As if it were from a 'Stranger'. The symptoms 'sound' like they might be Connected, don't they?

I hope that I haven't Scared you '****less' Sara, sorry but it just Struck me, as I read this Post. I hope that I'm wrong, I probably am, and I've Worried You, for nothing. Only can I ask something please? Will you get yourself thoughly Checked, just to PROVE me wrong? That this 'Silly Old Man' has Read, Far too, Much into a few Headaches.

In the mean time I, really do, hope that your Headaches get better. Maybe now that this ****ing HOT weather is over (I hope!), maybe we will ALL feel better. I know that my Tummy/Guts are MUCH better now!

Hoping that I'm making a 'Fuss', over nothing. Kindest wishes...

AndrewT

[Sara_A in reply to AndrewT]

I don’t really understand what u are trying to say?? Do u mean u think it’s the mycophenolate that’s causing it??

[AndrewT in reply to Sara_A]

Dear Sara_A

I'm not, too sure, myself quite what I meant...Stupid as it sounds. Something, in your symptoms, has 'Worried' me, though I honestly can't say what. I'm sorry but I, just Can't, quantify this further. I, just felt, that I had to pass this on......I TOLD you that I was a Stupid Old Man, didn't I? Though, thinking about this, it COULD be a Side Effect, of a Drug- not necessarily Mycophenolate.

AndrewT

[field]

Hi Sarah A

Sorry for responding to your post so late.

Just wanted to ask could your symptoms be a reaction to mycophenolate. I had a very bad reaction to it. For the first few months on low dose was ok than it was increased. Once it accumulated in my system all hell broke loose. I was in and out of a&e with severe high blood pressure a pounding, headach, sleeplessness until i worked out it was the myco that was causing the symptoms. I stopped it and within a day i could feel my symptoms easing.

[Anicca]

Hi Sara_A, I'm sorry fo responding so late, but I also suffer from chronic migraines (hemiplegic) with my SLE, so it often keeps me from doing things - especially on screens. I just wanted to say - as well as that I'm very sorry to hear that you are suffering! - that I very often get cognitive problems preceding and during migraines. Everything from vertigo, to not being able to think or speak clearly, and memory issues - it's all really common with migraines. I'm also on Myco (although soon to be tapering down as we try Methotrexate again) and boy, would it be great if the migraines were just a side-effect! But, given your APS, it may be something much more a part of the conditions. I really hope you get to the bottom of this difficult problem and experience some relief soon. Best wishes xox