Tinnitus and dizziness

Yesterday I had a serious bout of tinnitus (ringing in the ear), I was sweating profusely and was dizzy and faint. At the time I was on the computer. I had done quite a bit of baking earlier in the morning, so I don't know if I had overexerted myself or if this is sarcoid related. This is the second incident for me. Has anyone experienced similar episodes?

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I have constant tinnitus -- don't know if it's related to sarcoid or not. I've told my doctors about it but they don't seem concerned. Since I'm post-menopausal I can't differentiate my 'sweats' from normal hormonal changes from the effects of the disease. But of the three concerns you've identified I'd be most curious about the dizziness. I had two profound incidents of dizzy spells about 1 week apart 2 years ago. Thinking neuro-sarc my doc ordered a brain MRI which came out normal and sent me on my merry way.

Two months later I suffered an episode of profound syncope (fainting) and collapse that resulted in an ICD implant and a diagnosis of cardiac sarcoidosis -- the cause of the dizziness and fainting episode.

As patients we have the constant challenge of always having to balance alarming information and possibilities with trying to maintain sanity and reasonableness. Just because you have strange symptoms doesn't have to mean dire outcomes. But when the symptoms concern you, you should always seek professional advice. We have to be our advocates.

Keep us updated. Good luck to you.

--Marie

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Thanks for your reply, Marie. I truly appreciate your support.

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I also have constant tinnitus (sometimes very loud) along with a total loss of my sense of smell. The doctor told me that these are symptoms of neuro-sarcoid. The brain stem regulates these senses. Sarcoid also can cause the sweats. When an MRI didn't show lesions on my spine or brain, I started trying to improve my symptoms with herbal supplements and better diet. I am going to try lipoflavenoid that can be purchased over the counter for the loud ringing in my ears. You may want to try that as well. The doctors could do a spinal tap to check for the neuro-sarc. Some others have posted that they had clear MRI and got their diagnosis with the tap. You may want to ask your doctor about that.

Good luck to you. It is very frustrating trying to get the diagnosis so that you can get the medical help that you need.

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Yes, that ringing drives me CRAZY!! Plus I get more headaches than I ever did in my life and I feel like I get Vertigo.. that is how dizzy I will get sometimes. but that ringing is neverending...

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Have it all day and it gets very loud at night.

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Hello! Oh my goodness, I feel like I am not crazy having "weird" symptoms!! I, too, have tinitus and occasionally experience vertigo...this past weekend, in fact! I have been to see an ENT who thought I had "Menieres Disease"....symptoms were ringing in the ears and severe dizziness/nausea..running into walls even! He ruled that out and could never figure out why I had this! Still have bouts of dizziness and ringing in the ear/ear pain.....

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I have dizzy spells and ringing in my ears. I've had the dizziness for more than 10 years and the doctors could never figure out why. I've had the ringing in my ears now for less than a year but it never stops. My doctor told me she was sorry. There's nothing medical science knows to do to "fix" ringing in your ears. I figured as much.

I believe mine are caused by my Sarcoidosis. I've put 2 and 2 together and this is my diagnosis since the doctors never could "figure it out". I had it but they couldn't find a reason for it. Well....bingo....I have the reason now. All the dots of my life's puzzle are being connected with my diagnosis of Sarcoidosis.

However, I do NOT sweat when it happens UNLESS I don't pay attention to the dizziness and try to keep pushing forward. I get more and more dizzy and THEN I start to shake and THEN I sweat and THEN I vomit. So I've learned that when it hits, I have to go home and lay down. Sleep. That's the only thing I can do. The ringing is just a part of my "elevator music" now. It's there but I've learned to ignore it. LOL!

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Sammy I like the elevator music. I have the dizziness, I get tired for no reason, well the reason I am tired is because I am awake, and when I am awake i feel I would like to do more than sit.G-d Bless computers we can sit and type and be awake or if we fall asleep we are the only one who knows.I sit because I am too tired to move.Even if I do not have far to go. I rather sit and not even try. Sounds at times are just too loud. I have found that tv sicoms can trigger the dizziness. door bells,I jump even if I am expecting to hear it ring. I rather have nothing on and have quiet. So quiet that I do not wish to hear my own breathing. It sounds so nice just to have the quiet. I sometime have to remind myself to turn on music for if I remain in this quiet state people will have me locked up so I turn on some sound.I now have sensitive fingers and my body requires soft materials.The softer the better. I remember touching doe skin it was so soft I did not want to stop rubbing it.ok it was almost like having sex with my finger on a hand bag? No I am not nuts yet lol and if any of you have had this please tell.all i know is I only buy clothing that feels good.But maybe not that good , you know what I mean.

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Is anyone in this dicussion taking Plaquenil. My ears have been ringing ever since I started this drug over 2 yrs. ago? I do not have nausea but maybe a little vertigo associated with it.

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I am on Plaquenil 400 mg once a day. I do believe that the tinnitus and dizziness are side effects of Plaquenil. Thanks for the tip, Dog.

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I don't take Plaqueril, but have the tinnitus and dizzy spells, although, when I was more frequently dizzy, like Marie, I was also dx'd w/ cardiac sarc and had to have an ICD implanted.

I don't lose my sense of smell, but smell phantom odors...like stale cigarette smoke, when NO ONE smokes in the house.

I see my neurologist in 2 weeks and will bring this up w/ him.

Todd

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I get the ringing in my ears but it really gets bad if I eat things that have lots of additives, food colors, etc. I do know that with me, too much chocolate or caffeine will bring on my dizziness. So I rarily eat chocolate :( and very seldom drink a zip of coke.

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Recently I started with vertigo. It has been over a month and although it is not as bad as it was intially it is still happening. I have had what my ent calls olfactory hallucinations for years. I smell things that no one elso does. The most common odors are cigarette smoke (no one in my life smokes) and gas odors such as what we put in a car or the kind that we use in our house. My husband insists there are no gas odors in the house. It is very distressing. I think we are getting used to it now and I don't ask him more than once.

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Yes I too have had Vertigo and ringing in my ears for 3 years. That is how long I have been on steroids. My ears ring all the time. I was tested for menieres but had no hearing loss so it was ruled out. I started with real dizzy spells that I had treated with Meds and Physical Therapy sessions. I have been to 6 ENTs, several chiropracters, PT Vertigo specialist, U of M vestibular testing clinic and the ER several times. I can't use nasal washes. I have had MRIs, CT scans and everything else. I have tried meds, Sea Bands, and standing on my head. I was hospitalized twice. My eyes are tested every 6 months. I have slept propped up in bed for 2 years and NOTHING cures it. I am about to start balance PT again to see if it might help. It has not been a true spin dizzy for over a year but I have balance problems. I can't drive most days because turning my head fast to see traffic makes me sick for the rest of the day.
I have heard that message where they stretch your neck muscles can help and I might try that. Because of the steroids mine are puffy, sore and tight. If anyone finds something that will work let me know.

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I don't take any meds yet by choice until I'm forced to do so & have many of symtoms (ringing of ears, nausea, dizzyness & vertigo) so I'm thinking it's just part of the sarc. The vertigo is getting bad. Have to be aware when driving. I drop stuff all the time now as well. Does anyone else have issues with holding on to things? My grip is getting really weak. I break dishes a lot.

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