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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/20/2017 10:23 AM (GMT -6)   
I don't really think this is related to Lupus, but I have vertigo yet again! I think this is the 4th time this year. Lasts from 2-5 days. Sometimes the Epley Maneuver helps, sometimes I"m too dizzy to try it.

Does anyone else regularly get vertigo??
Thanks

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 423
   Posted 4/20/2017 12:46 PM (GMT -6)   
Hi Lynnwood,

My son has Neuropsychiatric SLE (NPSLE) and suffers quite often with vertigo. Unfortunately, I can't think of anything that has helped him other than down time, cool rags and dark rooms. He's been suffering really bad with vertigo lately and our rheumatologist is referring him back to the neurologist for further help.

Hope your vertigo passes quickly and you're feeling better quickly.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/20/2017 3:50 PM (GMT -6)   
I had severe cognitive dysfunction when my Lupus was more active - neuropsych testing showed a significant IQ drop (12-15 points) - that's the quick summary of the findings, anyway. But they never went any further into investigating the possibility of NPSLE - don't think my current rheumy (first one, a genius, passed away) has any clue that even exists.

Has your son had an extensive investigation by a ENT Dr? I think that's where I'll go next, dunno' if there is any chance of finding one who is Lupus-aware.

Thanks.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1643
   Posted 4/20/2017 6:29 PM (GMT -6)   
Hi Lynnwood. I've often had vertigo since Lupus. It's a part of the reason I've fallen so many times (including the time I broke five ribs). Interestingly since I stopped Benlysta and my Lupus returned so has the vertigo. I didn't have it while on Benlysta.

I wish I had some good advice. I either grab hold of something close or immediately sit on the ground, and lie down as soon as I can.

I've read somewhere that Lupus and Sjogren's patients can get vertigo. The fluid in the inner ear or something else in the ear is involved. I'm so sorry that you have it Lynnwood. I know how difficult it can make daily living. Especially if you drive. Be careful Dear. Love Ya, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 423
   Posted 4/20/2017 8:50 PM (GMT -6)   
He has not Lynnwood, but you're right an ENT seems more like the line of specialty that would handle vertigo since it's inner ear than neurologist, I hadn't thought about it until you mentioned it. I'll have to ask my son why our rheumy is sending him where he is, perhaps he should question it.

My son was in graduate school in Colorado when they changed his diagnosis from SLE to NPSLE, he was having a tremendous amount of cognitive and neurological issues. We thought for awhile he was going to have to drop out of school and was going to have to file for disability he was almost that incapacitated. Once they got him on the correct medications he has been able to function at about 80 to 90%. There's not a week that does not go by though that he does not experience some sort of dizziness, numbness in his face and headache.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/21/2017 7:20 AM (GMT -6)   
Yup. I had to drop my contracts, let go of my employees, close my business (software engineering), drop out of my PhD program during the final stretch of the dissertation, stop reading (5-6 books a week) and stop running (marathons.) Spent a few years in the bed or on the sofa, unable even follow a 20-minute sitcom - didn't drive as often I could not even recognize the intersection at the end of the street where I've lived 30+ years. And fight for disability without a brain in my head. It was a really fun time.

I'm not kidding around when I say Cellcept was my miracle!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 423
   Posted 4/21/2017 9:39 AM (GMT -6)   
Yes, Ryan is now on Imuran, I bet Cellcept would do him wonders. He is 27, he has one child and his wife is pregnant with their 2nd (due in 2 weeks) so he has asked our rheumy not to be put on any medication that would prohibit him from having children if possible. I have really struggled with this because of many reasons, it is affecting his health, he should be on a higher strength immunosuppressant to control his disease. If his disease is not kept in check, he risk the chance of truly becoming disabled and then what is a young family going to do? And truly should he be reproducing? I have told him I don't know that I would have had children if I'd known I had lupus and here he does know. Is it fair to my grandchildren to possibly pass this on to the next generation? It breaks my heart beyond belief to see my son in the condition he is. There truly is no right answer I know. All my son wants is to live like a normal 27 year old, he too loves to run marathons, work out, etc and he is becoming more and more limited in the amount he is able to do. My feeling is he should be taking the proper medication now to control his disease to prevent it from being worse down the road.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1329
   Posted 4/23/2017 5:36 AM (GMT -6)   
My wife has BPPV which is the most common cause of vertigo. In some cases it is chronic and she has had several severe rounds of it and been treated by vestibular therapist. Fortunately it has been ok the past 3 years but she knows what movements provoke her problems and avoids those as best she can.

However there are many causes of vertigo other than microcrystals dislodging which is more associated with age and/or injury than lupus. The epley maneuver only works for bppv and does not help many other causes of vertigo.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/23/2017 11:51 AM (GMT -6)   
Yes, there are a number of causes of vertigo. Unfortunately my Drs don't seem interested in investigating or diagnosing any of them.

Thus my original question -- Do any Lupus patients regularly have vertigo, and has it been diagnosed as being associated with Lupus. If so, I'd sure like to know more!

PS. I did finally find this: vestibular.org/autoimmune-inner-ear-disease-aied, which seems to apply.

Post Edited (Lynnwood) : 4/23/2017 11:54:56 AM (GMT-6)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1643
   Posted 4/23/2017 12:03 PM (GMT -6)   
Hi Lynnwood. Mine certainly hasn't been associated with Lupus. Over the years I have had many complaints and docs run tests but when they can't find a cause then they say, "It must be Lupus."
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/23/2017 1:45 PM (GMT -6)   
In theory, if the vertigo is part of an auto-immune disease, prednisone treatment should help it pass. I'm not sure I've ever found that to be the case.

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 142
   Posted 4/24/2017 7:23 AM (GMT -6)   
Thank you for posting this question. I have just been diagnosed with centralized vestubular vertigo. I have been prescribed mecliizine to aid in the dizziness. Helps very little. I have to go to therapy 3 times a week for 5 weeks. I have been experiencing symptoms since January. Never had this issue before my inflammatory disease starting taking over my life. I too have been wondering if there was a direct correlation between the two. I hope you feel better soon.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 4/24/2017 7:37 AM (GMT -6)   
Lisabeans,

What kind of Dr made your diagnosis?

My GP and my rheumy haven't been any help.

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 142
   Posted 4/24/2017 10:31 AM (GMT -6)   
Lynwood, I actually got the diagnosis from my nurse practitioner. She ran a test that an ent would run to see what the cause was. Came back with central vestubular vertigo. My rheumy said he could not relate the vertigo to anything I have been going through. I am waiting to see a new rheumy in May.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

medic-42
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 5/1/2017 12:35 AM (GMT -6)   
I have been DX with Lupus since November. My initial symptoms were that I was horribly dizzy and had muffled hearing in my right ear. Nobody paid too much attention to me when I tried to address it. My Dr told me to go to the ER and get fluids because I was dehydrated. I was referred to an ENT who did some test and said I had permanent vestibular damage, (for whatever reason) and would need a cochlear implant. Apparently, many things can cause this. Well, my GP said for me to get a second opinion. In the mean time go back to the ER and get more fluids. I flat out told him dehydration was NOT the issue, that I was horribly dizzy, felt drunk all the time, (I don't drink) and I was now losing my hearing in the other ear as well. A month later, my hands, wrists and shoulders became unbearably painful. My hands and wrists were so swollen I couldn't make a fist. Also, my hair was falling out. Finally my GP refers me to a rheumatologist. After an array of tests she said she was sure I had Lupus and maybe RA and Sjogren's. When I got to the second ENT, he said there are a lot of things that can cause the dizziness and hearing loss but the way mine presented itself, it's probably the Lupus. I am now on Plaquenil and Prednisone. I am nearly completely deaf and have debilitating dizziness everyday all day. I am pretty miserable. I am now starting to taper the Predisone. I am having a fairly rough time with that but want off. I am better than when I first was Dx'd but still not that good. I am new here and just wanted someone to talk to. Thanks for listening.

Betty H
New Member


Date Joined May 2017
Total Posts : 1
   Posted 5/1/2017 7:07 AM (GMT -6)   
I think that I have vitiligo. I was reading where hair color is bad for you, so I have stopped my hair color. I am waiting on the biopsy of the skin to come back. Also do anyone know about the best treatment to stop the decease from progressing.

MrsC207
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/1/2017 7:19 AM (GMT -6)   
http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251

It could be menieres disease. Check this out to see if your symptoms appear to be the same as listed here.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7450
   Posted 5/1/2017 10:01 AM (GMT -6)   
medic-42, Welcome to HW - so very sorry that you have permanent hearing loss. It's ridiculous that it took so long to get you to a rheumatologist and proper treatment. Are you still having symptoms of swelling and dizziness? How much prednisone did they give you? If you are still having symptoms, it may be best to stay on prednisone a while until things are more controlled. Other treatments that should be considered are Imuran and/or Cellcept and/or MTX.

Betty H, Welcome to HW. Vitiligo is the disease where your skin looses its pigmentation. As far as I know, it has nothing to do with the disease we are discussing here, which is Lupus. We are talking specifically about vertigo, which is where the room seems to be spinning around. Sorry, but I don't know anything about Vitiligo.

MrsC207, Welcome to HW. Do you have Lupus and/or Meniere's Disease? If so, what kind of Dr diagnosed it? Pretty sure what I experience isn't Meniere's, as I don't have any hearing loss and the vertigo lasts much longer (days) rather than the shorter (20 mins) periods typical of Meniere's.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

medic-42
New Member


Date Joined Apr 2017
Total Posts : 4
   Posted 5/1/2017 1:05 PM (GMT -6)   
Hi Lynnwood,
Thanks for the welcome. I have a very long story but yes, I still have swelling, pain, and dizziness which includes debilitating disequilibrium. I was started on 40mg when first diagnosed along with 200mg of plaquenil daily. This was only almost 5 months ago. The next day, I was 75% better and the next day, it was like I never had any symptoms. I'm sure that was the Prednisone doing that. It's been pretty much like that with a few bad days until steroid side effects started making me MORE dizzy, blurred vision, depressed, swollen face and weight gain making it hard to get around. So, after a month of 40mg I was starting to be tapered at 5mg every 4 to 6 weeks. At first it wasn't so bad but just now, I have been reduced to my last 10mg. I have seen on this forum that the last 10mg can be the worst to get off of. So, I think I will have to bite the bullet and ride it out. At least that's what I want to do. Hopefully, I can get off all steroids.
I do believe I am not a candidate for those other meds you have mentioned as they are cancer causing. At one time my rheumatologist mentioned MTX and then decided against it.
In February of 2015, I was taking my son to the doctor's office for removal of sutures in his forehead when all of a sudden I could no longer speak. I dropped him off and drove home, called my boyfriend and asked if he would pick up my son and bring him home. The next thing I know, I am in an ambulance on my way to the nearest Neuro Center. At that time, my hands and wrists had been very painful and extremely swollen for a couple of days. Well, to make a very long story shorter, I ended up having a brain tumor that was swelling by the minute. I was then pumped full of high dose Decadron IV and admitted. I ended up having radiation which eradicated the lesion quite nicely but had to stay on the high dose steroid for months. I asked if the hand and wrist swelling had anything to do with it but was totally ignored. The steroid made it all go away. After being weaned from the Decadron all my symptoms came back along with hearing loss and dizziness. That's when my doctor decided to take a look at what I was saying and referred me to the ENT and then the rheumatologist.
So, I have actually been on some sort of steroids for over a year now and the rheumatologist is trying to get me off. Hopefully the Plaquenil will kick in and be enough. I have actually only been treated for Lupus for a few months and I know it takes time. If anyone has any advice for me I would be ever so grateful. This disease really is awful. It's nice to know I am not alone.
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