Droopy Eye and Headache

[Unf4bul0us]

Hey everyone,

I'm 21 and was diagnosed with Lupus in March of this year. For a few months I've been noticing that my right eye often starts to droop in the evenings if I'm tired. However, for the past 6 weeks it's gotten a lot worse and goes through spells of drooping for days at a time. On top of this, I woke up with an awful headache last week that has been constant for the past 11 days - no analgesias make any difference!! My Rheumatologist called me today and wants me to go in for a brain scan. Just wondering if anyone else has had anything similar?

Thanks,

Emma x

[Puska]

Have you been checked for Bells Palsy? My niece gets this from time to time. All part of this weird thing called Lupus - for some.

[Unf4bul0us in reply to Puska]

No I haven't but I have been referred to Neurology so just waiting on that appointment. I've got no mouth involvement though thankfully!

[Hidden]

Headache yes. Often. Droopy eye. No. You sure it’s just not fatigue? I see can affect an eyelid. The eye uses muscles too.

[Unf4bul0us in reply to Hidden]

It's always the same eye and seems to follow certain patterns so I think it's more of a neurological thing!

[Fennella02]

Yes, I did and MG was suspected. I didn't have positive antibodies or SFEMG but I still have a few milder features of it. MG is an AI disease and can occur with lupus. It's not an easy thing to diagnose definitively. I also would get crashing headaches for weeks at a time that would make me cry out. All could be attributed to migraines too. Things are much better now that I am on dmards and steroids.

[Unf4bul0us in reply to Fennella02]

Yeah I have read about MG and my GP did mention it. Did you have any other symptoms? I do get muscle weakness but that could easily be down to Lupus? Good to know the steroids help, I'm currently only on dmards x

[Fennella02 in reply to Unf4bul0us]

My most major problem is fatigable respiratory weakness and occasionally my arms would run out of strength. Anything that uses lots of sustained muscle strength like shivering will take a huge toll and I have to be careful with reactions to certain drugs and dental anaesthetic etc. I don't have a diagnosis of MG as such but I'm always cautious - an MG crisis can be very serious. There is an excellent forum called Neurotalk with an active MG section. It is American so they don't quite get our NHS restrictions but there's loads of info to be had. I hope your Neuro referral comes quickly although mine was rather useless and a lupus prof was the one to take me seriously. Xx

[Unf4bul0us in reply to Fennella02]

My arms are the same but not sure if it's just lupus or not! Sometimes I struggle to hold the steering wheel or dry my hair with the hairdryer. Thanks so much for your help xx

[LydiaG]

Hi Emma, I did too a number of years ago amongst a few other symptoms like difficulty swallowing and double vision. I was then diagnosed with myasthenia gravis (MG) which is another autoimmune condition and it is not uncommon to get more than one autoimmune together. I was referred to the neurologist and the although some people here are saying that MG can be a nightmare but I actually found it was easier to manage (there are effective meds). I actually find lupus alot more unpredictable. It also does have some common features like the fatigue. All the best and good luck x

[Unf4bul0us in reply to LydiaG]

I have had difficulty swallowing in the past but, again, put it down to lupus. Thanks so much for your help!! X

[MandaH1]

I went through a phase of getting that and had no joy with rheumatology. Then one day I saw a physio about something unrelated to headaches and he asked me if I get headaches on my rhs. I said yes. He then did something called dry needling in the muscles at the base of my skull and taught me massages to do if a headaches comes on. It was amazing. Haven’t had this problem since and it’s been about 3 years! It was caused by muscle tension! Maybe that’s worth perusing?

[Unf4bul0us in reply to MandaH1]

That sounds interesting and something to keep in mind, today's marks day 14 of the headache!!! Thanks for your help x