I am sorry to make a stupid post, but I'm a bit worried!
I was diagnosed with lupus in the summer and I was on MPA because of kidney involvement. I haven't had any other noticeable symptoms and am not taking any other medication.
I'm a bit worried because today I've had an absolutely terrible headache on one side, blurry vision, feeling and being sick and it's very unusual for me because I never get headaches. I can't bear the light and I'm basically typing this one sentence at a time because I can't focus on a screen for more than about 30 seconds!
It's probably nothing but I'm starting to have scary thoughts like lupus is affecting my brain, or whatever. Does anyone have any experience or knowledge...would this be how it manifests? Should I seek medical advice, or does it sound like I'm being a bit paranoid and making a fuss about nothing?
Thank you!
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November90
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You’ve got a migraine with photophobia. Since you’ve never had this before you need to go to the hospital. This does not have to be related to lupus so please go get checked out. Please tell them like I said it. Please tell them you’ve never had a headache this bad and it’s one-sided. Please let us know how you are.
Depending on the current state of your kidney function, this too can cause headaches. Your kidneys are a filter for the blood and if they are not working properly they are leaving extra toxins in the blood.
If your kidneys are in poor shape make sure you are drinking plenty of water to help flush the kidneys.
Dehydration can also be another thing to give headaches.
You can also get nausea if kidney function is quite low. Again due to build up of toxins.
Everyone is telling you to get it checked out whatever the initial cause, and they are absolutely correct.
It is not a stupid posting as you needed more information. And your posting can also help others.
But do try to allay the fear and get checked out. Anxiety about what is occurring is only likely to add to stress and greater likelihood of more headaches.
I agree with neuronerd. Since this is the first time you have had the headache and visual symptoms, it is best to go to A & E. You are certainly not being paranoid. I had my first migraine with similar symptoms years ago. You need to be evaluated. And they have medications that can help with the pain and nausea. Please let us know how you are.
With a severe new headache, with vision changes I agree an ER trip is warranted. It will most likely be ok but with serious things like clots or bleeds time is of the essence so erring on the side of caution is always best. Thinking positive thoughts for you!
Agree with the others - go get your headache checked out by a doctor. Could be straight forward ( but bad) migraine but important to get assessed properly
Have you ever been told whether you have high anti phospholipids (APS) associated with your lupus? This can also cause headaches and treatments such as aspirin can make a big difference
Dear November90, I agree with Neuronerd, KayHimm, Roarah, Wittycjt and Pickzie, you should seek medical advice. At the very least they will be able to prescribe you the correct specialist medications for migraines. Lupus patients are more susceptible to migraines...I went through a migraines phase triggered by overhead office strip lighting. Lupus photosensitivity is therefore is thought to be a particular trigger. You could check your environment for such triggers....others include stimulants such a coffee, chocolate. Locating the triggers and the right meds combined with relaxation in a temperate, darkened room can help. The symptoms you describe are truly awful so my best thoughts are with you that you get urgent help and can break the cycle of suffering. With my very best regards, Lily
I get those terrible headaches and sickness, was told they are lupus related. I really feel for you, because nothing I take seem to work, I become extremely noise sensitive too. Lay down in a dark room and try to sleep, I hate to be the bearer of bad news, but they can last for a few days. That the main problem with lupus, everyone's symptoms can be different.
Thank you for all the replies! I tried to sleep it off but I kept getting woken up with the headache and having to go and be sick...grim. Waiting to be seen at the hospital now, but I'm kind of past being worried, I just want it to stop!
I hope you're getting some help now and you're feeling better.
ps. speaking as someone who's had Lupus for 41 years - ( for future reference ) - It's definately not a stupid post, you're not being paranoid - nor are you making a fuss.
Getting new symptoms checked out quickly is always the right thing to do - I've lost count of the number of times I've gone to the ER - just in case - often followed by me harassing GPs & Specialists . They don't always like it - but it's a big part of having lupus and it has to be done.
Never ever doubt yourself or let others make you feel uncertain about you're symptoms and illness.
Nothing wrong with making a bit of a fuss. It's a fussworthy illness.
I am ok, thank you! I did see a doctor at the Urgent Care and they did what I assume were neurological checks (walking forwards / backwards, things with hands and arms, who's the so-called Prime Minister and so on) and said it sounds like a very classic description of migraine, go home and sleep it off and call 111 (UK out of hours number) for stronger painkillers and anti-emetics if it's not getting better. So at least I know it is nothing to worry about. I just hope that it is NEVER going to happen again.
If you do get another stick a cool pack on the back of your neck. Since it was one sided I hope this will give you some relief. No heat. That brings blood pounding to the area. (I’ve worked in Neuro for 30 years.) so you were photophobia and phonophobic. Make sure you never get dehydrated.
No - they did check that when I had all the bloods done back in the summer. I will mention it to my GP and consultant (luckily I'm seeing him again in a couple of weeks) but I'm really hoping it's a one-off. Seems to be wearing off now, fingers crossed...
Glad it is improving now. Migraines usually run their course with in 72 hours but what a hellacious 72 hours that can be. Caffeine works wonders for my migraines.
I'm so glad to hear that you got it checked out and that you're feeling better. A few years back I had my only ever true migraine and it was scary! It was the start of my journey to being diagnosed with UCTD as lots of weird stuff started to happen after that. But haven't had another migraine since thankfully 🙂
IN the states they sell " excederine headache " especially for migraines. It is regular aspirin with added caffeine. When I was diagnosed with migraine with aura at 11 my neuro told my mom to let me always have a coke with acetaminophen at the first sign of my headaches. I use to get a scintalating scatoma, a flashing blind spot across my field of vision preceding my headaches and if I got my caffeine in time I could avoid the headache part all together.
If you’re a migraine sufferer you should stick to the same amount of caffeine intake daily. But Roarah is right. A jolt of caffeine for some people helps. Since I get abdominal migraines with or without headache I have to go with nausea meds and prescription meds.
My 12 year old has had since she was two cyclic vomit syndrome I usually give a dose of benedryl directly after her first vomit and she then seems to avoid the headache. After eight her weekly episodes have luckily become only every few months but her headaches without vomit are more frequent. I think preventative meds are in her near future. What age do you suggest daily treatment? The diagnosing physicians mentioned a script for an old school decongestant I believe.
This form of headache seems so much worse than the vision aura I use to get. My last scotoma was November 3, the day before my pfo was closed. I think my migraine aura was a result of my atrial septal anyerism and significant right to left shunt. I still get occasional headache though.
Roarah they have something similar here in the UK - Nurofen Express, which is ibuprofen with caffeine. I might stock up! Of course, people are madly stocking up on everything here, because of the B-word... My husband came home with 10 bottles of shower gel the other day and I was like, really?!
I'm really hoping that it was a one off. I feel better now but just really wiped out, not sure if that is normal? The other thing that I wondered if it was connected was the evening before it started I had this sparkling thing in my left eye, like, moving around my line of vision. When I closed my eye, it was still there. It was odd but not painful or worrying and at the time I thought I'd been working and staring at a screen for too long. But now I wonder if it's connected. Sorry, that was a rubbish description!
The sparkling in your eye was most likely an aura. If you ever see that again immediately take the Advil with caffeine and it often aborts the headache all together for many of us. But I hope it is a one off too! You can look up scintalating scatoma on google. there are some perfect drawings of what I use to see. I was so excited to see a representation to show my DH to explain the weird blind spot. Xo
I did what you said (googled) and amazing! I found one that was exactly like mine (a glittery C - quite pretty, really).
Thank you everyone for all the advice - I think I am lucky because I was over it quite quick (2 days later completely back to normal). But I made an appointment with my GP next week to ask about prescription possibilities, just in case it happens again. And she also wants to do bloods for kidney function to check there is no issue (although I'm sure there is not, because I feel totally OK). I am very lucky to have such a thorough doctor!
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Headaches, is this normal?
