I have had episodes of syncope after a cervical fusion some 10 years ago and also when all the Fibro symptoms first started, but have not had that much of a problem since the Lupus diagnosis and treatment until the last couple of weeks. I know that previously I would get the dizzy spells at times when shopping, or doing some activity like cleaning or showering, etc. Now I am having them just by moving my head and even when reclining. I catch myself spinning even as I try to go to sleep at night. I know my Rheumatologist is out for the next couple of weeks, and even though I have a scheduled appt for this week with my Im, I do not have much faith in her. I don't really know if this is Lupus or Fibro or a heart valve problem (long history) Do any of you have dizzy spells to this extreme? Have they been described as a Lupus symptom? I have not had any med changes other than increasing LDN about a month ago and did not notice any specific changes. I know that today, I had to get out for a while and I could not wait to get home and lie down. I fell asleep and even when I would wake up after an hour or so, just coulf not get up. I went all day without eating anything but breakfast as I just felt so darned wiped out, and I feel it was whatever is causing the dizziness. Other than this bout, I had been feeling pretty good lately. Go figure.
I have to wonder if there is a virus going around giving people classic symptoms of BPPV (Benigh Paroxysmal Positional Vertigo) as I am just winding down from a 4 week episode, the first 7-8 days/nights were rough. It would awaken me several times as I rolled over in bed, then upon awakening just getting to a sitting position. I had the same BPPV 30 years ago and it lasted 5-6 weeks - just bending or turning my head would make the world spin over. Each person is different and triggers may vary from day to day. My right ear seemed to be the culprit. Just recently I was working with an ENT MD and he related that he has seen almost 50 people in the last month with BPPV with nausea and vomiting.
I've done a fair amount of medical online search to get updated and most say to try and wait it out. Unless labyrinthitis is diagnosed, most times this does pass. It does get more frequent as we 'mature.' There does not seem to be any direct corrolation with autoimmune diseases
It is very scary to lose your balance and/or feel the world spin over. I upped my hydration (I'm terrible about getting enough fluid) and just took my time with movements. So move with caution - don't want any broken wrists or hips here!
Thanks so much for the info. I am a little better today. Just feeling a little drugged, but not taking anything that should make me feel this way. I have not been around too many people lately so I wonder what the incubation period might be if it is the virus you mention. Since it is not worsening, I hope to tough it out to Friday. I know living alone, it scares the dickens out of you to feel this way. But as I said, I am taking it easy and haven't had any worsening, so I suppose it could be something as simple as a bug.
Just checking in to see if you are feeling any better. I reread your original post and wonder if you are in a mild flare with the fatigue and general not feeling well. Of course any virus can effect multiple body symptoms and sometimes it really is hard to differentiate what is the lupus, what is just a garden variety 'bug' and what is a new symptom.......sometimes you just have to wait and see and take it hour by hour....and do anything that will divert your attention.
Still having the dizzy spells, but I am to see doctor Friday. I did call my family and let them know what is going on and they asr calling to check on me. I think I will be okay til Friday and see what the doctor says. Thanks for checking in on me. You guys are great!
I did see my PCP on Friday, where she did some extensive labs. She tends to believe I may have some positional vertigo going on lately. She mentioned that it could be inner ear as well. I am awaiting the labs to see what they show and will go from there. The dizzy spells are improved, but just want to make sure there is nothing more serious going on. I have fought to maintain my weight over the last year or so and had started on protein shakes every other day. I had picked back up about 7 pounds, so I don't think it is diet related. I am just in a holding pattern til I hear the results. I don't think it is anything serious, the doctor is probably right!
Glad to see your update and that the dizziness is abating. I saw my rheumy last Thursday and had him check my ears just to make sure nothing was going on. All looked well. Am glad my positional vertigo also went away - didn't last as long as the episode 30 years ago
Hope you continue to improve!
Glad to hear your bloodwork was okay and that your symptoms have subsided!! Since it can happen more often as we 'mature' you will recognize the symptoms immediately. Just be patient with it and it will subside. But glad you saw your doc just to be sure.
I reported my episode to my rheumy at my 3 month visit in late January and he just assumed I had my PCP check me out. Told him no, just waited it out......didn't tell him I was all over the internet for the latest descriptions and what to do about it
Did have him look in my ears - no wax in the 'bad' side, but some wax in the 'good' side.