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theLword
05-29-2012, 08:35 AM
Hello all,

As much of you know I was recently diagnosed this past April. I've since started taking Plaquenil and have overall been feeling pretty good. However, last week I started having horrible vertigo for about 3-4 days straight. This is a common occurrence for me, so I'm trying to figure out what my body is telling me. I was debating if maybe I have Autoimmune Inner-Ear Disease (which I was planning on taking to my doctor about when I go back in July). But, today I was doing some reading and an article was talking about dizziness occurring during the onset of a flare. Yesterday I woke up not feeling well. I had a horrible throbbing head ache (the kind you know isn't going away any time soon) and nausea. I took some Advil and felt better for a little while until it wore off (which continued to happen throughout the day). Of course it didn't help that it was 90 degrees out yesterday and my air conditioning is broken. Then, later at night I still wasn't feeling great so I decided to take my temperature. I've been running a very low grade fever almost nightly since I was diagnosed in April (which could have been occurring for a while since I didn't know there was a reason to take my temperature daily! ha). But yesterday evening I had a fever of about 100.1 and so I thought that maybe it was more than just a headache. I felt better this morning and I know that it's easy to blame every ill feeling on Lupus. So, what I'm getting to is.. what are your signs that you may be starting to have a flare? I know we are all different in how our bodies respond, but any insight can help :)

debbie-b
05-29-2012, 02:00 PM
Unfortunately you are right, we are all different and have different kind of flares or symptoms.
My flare always starts with watery diarrhea, dizziness, debilitating fatigue and very bad joint and muscle pain. I also get headaches.
Running a low grade fever, is also normal with lupus.
It took me a little while to figure out, what a flare means to me. You will see patterns, which you may have to know that it is a flare.
Hope you feel better soon.

Debbie

E42brchick
07-17-2012, 06:13 AM
That sounds exactly how my flares start. First my hair starts to fall out, then I get severely dizzy like even when immlaying down and not moving my head (and I have been checked for Menieres)... I get tinnitus too. Then severe headaches and the horrible joint pain, fatigue, and low fevers, and nausea. Like I'm hungry but I still feel like I could puke. I was diagnose right before in Feb so this is relatively new for me too. The plaquenil has helped tremendously but my back went out on Saturday and now I'm in a full on flare for the first time since starting the med. I recommend calling your rheumy and letting them know and keeping track of symptoms. If your flaring severely several times a year on plaq it may be time to adjust meds. It sucks but try and give it time and it takes at least 6 mos for the full benefits of plaq to kick in. I hope you're doing ok. Keep in touch!

theLword
07-17-2012, 10:44 AM
Thanks for the response! I've been getting really bad vertigo (similar to the dizziness that you're describing) on and off. I was diagnosed around March, so I'm coming up 4 months on Plaquenil. I definitely notice a difference and a decrease in the frequency of symptoms. But, my vertigo is the only thing that really hasn't decreased. I went to see my rheumatologist a couple weeks ago for my 3 month check up and he told me that he thinks the vertigo is unrelated. I know it's easy to blame every ailment on Lupus, but for some reason I still think they're related in some way. He recommended that I try and physical therapy for vertigo (which I sort of think is a bunch of crap). But, my test results came back last week and everything is looking ok. There were a couple of things that I need to follow up with and of course my blood work still represents Lupus, but overall they are better than they were a couple of months ago. I'm hoping that within the next couple of months the plaquenil continues to work even more.

I hope you're starting to feel better by now!

tgal
07-17-2012, 11:31 AM
Lol... I am sorry but the "unrelated" line always makes me laugh. When my seizures started I was told for a almost two years they were unrelated because I didn't have that kind of Lupus! Finally saw a doc with Lupus and be said they were idiots and changed my diagnosis from SCLE to SLE. Ya just never know

theLword
07-17-2012, 12:21 PM
If I hear that I must have bad allergies one more time it'll drive me insane. If I have such horrible allergies how come I have vertigo all year round and wouldn't allergy tests come back positive if this were all it was? Well, they've always been negative! So, completely understand why all you can do is laugh Mari!

jmail
07-17-2012, 04:50 PM
The reason they mention allergies so much is because it can very well be that. They did them little pin-prick thingies on my back over the course of like 3 visits to an allergist ENT dude years ago. I've got enough stuff to keep me busy all year long, but never paid it any attention. Since I've been "officially" diagnosed as ashmatic (doesn't look right, spelled like that), which is actually the lupus getting me in the lungs, along with my CVID that scars my lungs a bit everytime I go into bronchitis (which is way too frequently)...

where was I? Oh yeah. Allergies. It's now very important that I keep my allergies under control. So everyday, in addition to all the other pills I get to take, I also have to do my allergy pill every morning, take a two-puff on my Symbicort, do a two-snort up the nostrils of my nasal stuff, and be sure I take my "rescue" inhaler with me to work. Repeat the same routine every evening. I've been doing it this way since the beginning of May, and (knock on wood) I've not had an asthma incident since. Prior to that, I was never really in distress from my allergies, or so I thought. I just couldn't breath. Or hear. Or keep my balance.

When you say "vertigo", do you mean the "fall down and can't get up" variety, where you have no idea which way is up, or are you referring to a very dizzy dizzy, where the room spins, and you have a tough time detemining which way is up? Otoliths (http://www.dizziness-and-balance.com/disorders/bppv/otoliths.html) is one of many pages you can find on loose rocks in your head (seriously), among other things that can happen to your inner ear and influence your balance. And "yes", they *can* retrain your brain to accept a certain "off-balance" as the new "balanced" attitude. It's really quite remarkable what your brain can do with the data fed it...

magistramarla
07-17-2012, 10:24 PM
I deal with vertigo and loss of balance quite a bit. I was diagnosed with Meniere's long before the AI diagnosis. Then, the rheumy said that it could be Autoimmune Inner Ear Disorder. AI diseases can attack any system, including the inner ear.
Hugs,
Marla

theLword
07-18-2012, 11:16 AM
Hi Jmail,

I've had both of the types of vertigo you described. I get the manageable kind more often though. It usually lasts a couple of days and it's on and off. I might be severely dizzy for a couple hours and then not as dizzy for an hour, etc. It also changes as to if the room is spinning and if I feel like I'm spinning (which is odd because I was told that they mean two different things). I had extremely debilitating vertigo last spring and I couldn't even think about getting out of bed. I couldn't walk and I could hardly hold a conversation. It was really scary and lasted longer than I thought it would. My doctor couldn't see me until the end of the week and it was obviously gone by then. All she did was prescribe me Antivert.. which wasn't very helpful after the fact (or during an episode really either). My doctor said something about crystals in my ear being out of whack, etc. He recommends that I go to the Penn Hospital Balance and Dizziness Center for physical therapy, but I'm not completely sold on going yet and would need to make sure that they accept my insurance. I'll keep you all updated if I decide to try it out though.

Marla- I know we've talked about your vertigo before. My rheum sort of rubbed my vertigo off and insisted that it's unrelated to Lupus, but I'm not completely sold that it's not AI disease as well. The only thing is that my symptoms have definitely decreased since starting Plaquenil (less achy, tired, and also my low grade fever has gone away as well) so I'm thinking that he might be right because there has been no change in my vertigo. I guess we'll see with time! I've never been tested for Meniere's so I guess that's worth a shot as well. Hope you're doing well!

debbie-b
07-18-2012, 12:16 PM
I just remembered that I had a real bad case of dizzyness one time during a flare. It woke me up out of my sleep, thinking that I would fall out of my bed. I got up and walked like a drunk, hitting both sides of my hallway wall, went to the bathroom and sat down and when I turned my head I literally fell off the toilett. My husband took me to the doctor and he said it must be the Lupus inflaming the nerve between the ear and the head. He gave me some kind of medicine, but I cant remember what it was, it was about 2-3 years ago.

Debbie

SleepyInSeattle
07-18-2012, 02:55 PM
My MIL has Meniere's (had SEVERE vertigo with it...), and I had problems with it a few years ago (probably otoliths)...in both cases, physical therapy pretty much "cured" it. They really CAN train your brain/inner ear to re-balance, and/or reposition the otoliths so the dizziness goes away (depending on the cause of the dizziness). It's not woo-woo medicine - it's just understanding how the body and brain work, and using that to fix balance issues. Much better than drugs, in my opinion! PT is not effective for everything, but it can be VERY effective for balance issues.

Of course Lupus and other AI issues can be a real kicker...I recently lost my hearing in one ear to Autoimmune Inner Ear Disease but had almost no dizziness. They just never know what it's going to do...but if it is the immune system attacking your ear, please be extra aware of any hearing loss you may be experiencing and go in right away....if they get you on steroids within 24-48 hours of the hearing loss your chances of recovering at least SOME of it are much greater.

After my experience, I think they should tell this to everyone with a Lupus diagnosis. if you have a sudden loss of hearing, treat it as an emergency!

jmail
07-18-2012, 03:37 PM
... please be extra aware of any hearing loss you may be experiencing and go in right away... if they get you on steroids within 24-48 hours of the hearing loss your chances of recovering at least SOME of it are much greater.

After my experience, I think they should tell this to everyone with a Lupus diagnosis. if you have a sudden loss of hearing, treat it as an emergency!
Ditto that SleepyInSeattle, amen and amen. The steroids are used to reduce the inflammation and damage from that. I had no idea what vertigo really was until I had it, then "dizzy" didn't mean the same thing. Thankfully for me, I have a good pcp who sent me right away to the ear guy and balance people, who did all sorts of testing, and told me I had possible Menier's, and also literally rocks loose in my head... Reposition the rocks, re-train for the current menier's damage, and pay attention to it in the future.

lizbond36
07-18-2012, 04:50 PM
I have vertigo for years way before I was DX with Lupus, I take meds to control the vertigo. I know when my lupus acts up, I would write in a notebook of your daily life with Lupus and soon you will see a patten. I hope the best for you,
Hugs
Liz

theLword
07-19-2012, 07:11 AM
Thanks for Sharing Debbie!

That had to be a really scary experience. When I'm dizzy I usually became pretty disoriented, so I can't even imagine waking up in the middle of the night and feeling that way. I'm happy you've been dizzy-free since though!

Tracyl50
07-24-2012, 08:21 AM
i get a lot of dizziness. i never thought it could be a flare up. i also get a lot of headaches. I'm still learning what is a flare up for me. I'm guessing i started one yesterday. i was dizzy and my joints hurt and i had chronic fatigue .. i also feel like my head is in a fog. Its hard to explain to people what i mean.

theLword
07-24-2012, 01:01 PM
I definitely just started to read my orinigal post and thought to myself.. wow we have a lot in common.. and then I realized it's because I wrote the post! haaaa Lupus moment much? :)

Tracy- I completely understand what you mean. It's been such a confusing time for me, but know that although it might be difficult for others to understand I've been there too and I know what you mean. It sounds like our flares begin pretty similarly. I hope you're starting to feel better than you were the other day. It's such a good feeling to know that I'm not alone. :)