Don't know where else to turn....dizziness for 3 years..sorry so long but need help

Symptoms & Treatments
1

I don't know if any of you recall I asked a question on here a while ago about me dealing with dizziness (not vertigo) and lightheadedness intermittently for years.

I have been diagnosed with undifferentiated connective tissue disease. Strangely enough, dizziness was my first symptom, followed by all the typical symptoms of joint pain, severe fatigue, Raynaud's syndrome, rashes, photo-sensitivity, etc. My condition (other than the dizziness is mostly under control.) I have flare - ups of dizziness just without my other symptoms and my doctor does not know the root cause.During flare ups, it can be daily all day for months on end. It is exacerbated by the sun, humidity, fatigue, and viruses. At it's worst, the dizziness wakes me up from my sleep and I am so dizzy that I dream about it. At it's worst, I am very confused, feel DRUGGED for hours during the day and really DISCONNECTED forget something I just did, and feel I will pass out and cannot function on my job at work.

Prednisone of 40 mg resolves dizziness which would make me think it's inflammation but my inflammatory labs have been normal during these dizzy flares. My rheumatologist put me on methotrexate which easily helped me to get off prednisone. Worked for months and I was dizzy free for the first time in years! I got a flare up about a year later, the dizziness returned, and had to go on prednisone all over again. Rheumatolgoist increased my methotrexate. Worked again. but now I'm on down to 5 mg on Prednisone and again struggling with daily dizzy spells. One neurologist said it was some sort of autonomic nervous dysfunction. Another didn't take much time with me and said migraine and wanted me to start Topamax. ??? A migraine would not be helped by methotrexate, correct? He did not have an answer for that. I had a normal EEG.No one has ordered a brain MRI with contrast. I asked my neurologist about it and he ignored my request!

Anyone think they have an idea what could be going on? I don't think my doctor would want to switch to a stronger steroid sparing agent without exactly knowing what is going on nor would I. She suggested Imuran. Think it sounds more autonomic? I'm so at a loss and this dizziness is really ruining my life.

Thank you so much for any input!

2

Have you been tested for Ménière’s disease?http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251

Low blood pressure?

Low blood sugar?

Side effects from other medications?

Not sure why they would deny you an MRI/MRA if they are going to be thorough.

Best of luck to you. This has to be horrible dealing with on a daily basis. Hope you get an answer soon.

3

Thank you for all of the input.

My rheumatologist didn't think inner ear because I didn't have vertigo but who knows.

My blood sugar has been normal during episodes. I am dizzy even after eating.

My blood pressure does run low at times & I have some autonomic problems but it's been normal even when dizzy.

I know. It's so mysterious and frustrating.

4

I would go to an ear specialists, it could be some kind of damage to the inner ear, or and this is really out there you could be allergic to one of your medications, my husband got this terrible dizziness no hives or anything else it turned out he was allergic to sulfa weird things happen all the time when your autoimmune and not just with lupus.

5

Actually I had severe dizziness and loss of balance with my migraine syndrome- treatment of the migraine itself resolved I am on a calcium channel blocker but Topamax is known to be an excellent migraine drug also

6

I can imagine how frustrated you must be. Is it just dizziness or do you also experience double vision sometimes? if so, it could be another autoimmune condition called Myasthenia Gravis... it affects your nervous system and I think (not 100% sure) it is usually treated with immunosuppresants and prednisone. Possibly thats why it got better with methotrexate? You might want to see a neurologist? Good luck!

7

Any updates, Lilac?

8

I don't know if your still having problems but that is one of my main symptoms for my lupus attacking my nervous system and brain. I also wake up with horrible dizziness and headaches. They found that I had it by doing a lumbar puncture. I am taking prednisone (weaning me down from 30mg) and cellcept. Do you have any other nervous system issues?