Hey all I am just seeking advice . I started to have a flare yeseterday but the joint pain as eased up a lot after a good nights rest. this past week I have had headaches/ pressure/ and extreme vertigo. Does anyone else get this with lupus? or should i be looking at more of a sinus issue? what helps you guys with this.
Also lupus has affected my autonomic nervous system - which is part of the CNS . (Central Nervous system) I have read that if lupus had affected the CNS that prognosis can be poor? is this true making me a little nervous especially now I have been having these headache, vertigo issues. and Yes I am seeing the doc Nov 22nd so I know to go there! :)
I get severe migraines from lupus- lupus headaches are actually extremely common. A lupus headache typically cannot be relieved by any type of normal medication (tylenol, etc)... and is beyond anything of a normal 'headache'.... mine are so bad that i tend to throw up from pain. I went on a migraine medication called axert, and it has been incredible for me... life changing for the lupus headaches. I do get very bad vertigo/ nauseau/dizzyness from them too. I have sinus issues as well (constantly running nose/ And/or pressure which makes it feel like my ears are blocked.) I am not sure if that is from the lupus, but the longer I am sick the more I am discovering that everything i experience is caused by lupus- so I wouldn't be surprised. I have also read that most of these things are caused by fibromyalgia, which I also ahve.
I woudl suggest looking into migraine medicatiopn! good luck.
I am with Lillianb22, totally talk to the dr about prescription migraine meds. I had migraine and vertigo for 2 yrs solid - the migraine meds being the only thing that would allow me to get out of bed, sit on the lounge, curtains closed, no TV no radio but at least out of bed for almost 2 yrs straight. Did all the exercises the dr asked me to do, but the migraine meds were the only thing that gave me any relief at all. Woke up one morning (as I say almost 2 yrs later) no vertigo and very little headache. That was just over 2 years ago now and still going strong. There is a light at the end of the tunnel, but get those meds as the tunnel can be long and boring. Best of luck
I have pressure and pain which is from sinus issues. I use a saline nasal spray to help relieve the congestion, but sometimes the pressure gets bad. I really think this is a lupus thing. I hope you get some answers, and please let us know what you find out from your next appointment.
Yes, Yes, Yes !! Sinus's give me monster headaches. Ongoing of and on sinus infections. I have got the pressure and dizzy too... leads to panic attacks at times because I feel so off. Did not know for years that Lupus was plaguing my body but now it seems every mystery ailment over this life so far could be related to the Lupus. Feel better and you are not alone!
Potslupus, glad you know to bring this to your doctor's attention. One caution? If you spike a higher than even in a flare fever, or find any discharge from an ear, consider getting checked for an ear infection much sooner! Never had them as a child but now they are an ongoing issue. Change of seasons tend to really do a number on a lot of us.
I woke up yesterday with vertigo. The very strange thing was I could stand and walk, as long as I did not turn my head. Very weird and unsettling. I rested as the day went on I was able to do more. Today, I am better but still a little shakey and I do have pressure in my head. I also was wondering if I should see a neurologist and ENT Dr. The truth is I am doctored out. I was over doing the days prior. Sooo back to reading, and some time on the computer.
yes, I get severe vertigo with lupus. It makes sense if you have CNS involvement that dizziness will be part of it. I was prescribed betahstine, (Serc) which is an opposite of an antihistamine. A cheaper one that works is meclizine, which is an antihistamine, but I don't understand how both of them can work.
I wouldn't worry about talk of a poor prognosis. I have 3 friends with severe CNS lupus and 2 just went into remission with Benlysta. I have CNS involvement but the CNS symptoms are easier than the other organs that have been attacked.
I had migraines from childhood up to my late 40's, and then they left. I don't know if I had lupus then or not even though now I look back and realize I had all the symptoms. The Dr. would just send me to ER for injections, and then I would go home, close the blinds, and go to bed. Now I get dizzy spells. I asked the Dr. about them and lupus and he didn't know?! So now I take "dizzy medicines." I will be praying that you get some answers when you go to the Dr.
I have some CNS manifestations (including mood, personality and cognitive changes as well as the headaches and pressure…) I will say it does have a worse prognosis, not so much for mortality as morbidity (=loss of quality of life), yet if it is identified early rather than in late stages, treatment can be pretty successful! I had been on just plaquenil and aspirin the first 6 months after diagnosis, since my first rheumatologist didn’t know much/believe much about early CNS lupus. When I saw a specific sub-specialist, he recognized my symptoms as fitting in the pattern right away, and after I had more testing (unfortunately a hellish experience with a spinal tap… Useful info but it was such a horror that in hindsight an empirical approach, I.e. treat based on symptoms and see if there’s improvement, might have been better!) However, once he got me started on steroids, it got significantly better, though tapering off led to flaring again and I was still having chronic symptoms at the dose I was on. What made a huge difference, which he had suggested early on after verifying responsiveness to steroids, was Rituxan, an approved RA treatment used off-label for lupus. It took me back to a very functional and tolerable quality of life and capability to attend school and work part-time, a major improvement from being too ill to work at all for a year and a half!! I’m not at my previous level of nonstop energy, of course, but I’m in a state where I can get by in life and enjoy myself plenty despite symptoms causing reduced participation and the need for work and school accommodations.
So, exactly what you’re doing by seeing the doctor, preferably one who is aware of the signs of early CNS involvement, will serve you very well now and especially in the long run! Preventing damage during inflammatory phases of relapse is even more important than addressing the symptoms bothering us (this is why treatments with side effects as bad as the disease itself are still worthwhile… Especially when your brain is at stake!)
Here are a few articles by my rheumie about the issue (as you can see, I’m very lucky to live in the area and have such a great doc!!) Happy reading, unless you’re the type to freak out more with more info… For me, awareness and knowledge is power, and allows proactiveness. We all know it never works well to come at your doc with the “I’m just SURE it’s this, and it’s a disaster!” approach… But printing out the article written for docs related to diagnosis might be helpful for if they aren’t already familiar (leave it with them at the end of the visit to consider. They’ll probable then look up the research my doc has done and etc. and be able to address your case with greater knowledge. Nobody wants to miss a major diagnosis like this! Yet they won’t be very open to education on it by a patient, but rather experts in the field.
One that’s a bit outdated (old, but good info) that explains well as an overview to patients and the community:
One addressed to doctors, but still quite readable in how it’s written (THIS IS THE ONE TO PRINT OUT AND LEAVE WITH YOUR RHEUMIE! You could do it casually by saying someone from your support group with early/moderate NPSLE sees this doc and shared the article. Leave it up to him/her to interpret its meaning and application to your case, and they should be less likely to scoff…)
Good luck, take care, and I hope the good news about treatment impacts you more than the stress of not knowing!! And I hope my example speaks for itself in how much better I’m doing
When I turn too fast or simply am walking I suddenly fall. I have injuredI myself many times falling. I'm not dizzy before I fall. I usually can catch my self on a wall, door or furniture but not always. When I close my eyes (like when doing something like rinsing my hair I need to hang on to something , It's like my body doesn't know which way is up and I tip over. I don't know if this is a Lupus thing or not but it's scary to tip over.
I'm having the same problem and have an appointment with a neurologist to check it out. I have wondered if it was from the lupus but until your post, I hadn't noticed anyone else having this problem The only advice I can give is to have your enter ears checked out. I did and this wasn't my problem but could be yours.
I am going to primary today- I had an MRI of my brain last year and CT Of my brain 5 months ago but that was for my POTS diagnosis. those were normal check out inner ear issues like Meineres disease or labyrinthitis I am hoping my doctor can get me in today otherwise I may go to the ER I cant even focus
Hi, I was diagnosed with lupus in the late spring on this year. the symptoms are so weird, but yes, I also experience light headedness/vertigo which I absolutely hate and naggy headaches (not like migraines). My rheumatologist and my ENT doctor both said that these symptoms could very well be from my Lupus. Frankly, i don't think any doctor really knows about Lupus. It is like a guessing game. right now, the headache , dizziness has gone away, but I sure that it will just come back when I least expect it. Don't feel alone. Just remember to focus on the positive things in your life and not the negative..... We only go around once in this world, so we just have to make the most of it. gglbs
