Tingling and Tinnitus (Ringing in the Ears)

[PlateletGal]

Hi Guys,

I know I've had both of these symptoms. Well a member here was recently told by her rheumatologist that these are not symptoms of fibro. I disagree and know I've read posts from many fibro & CFS patients who have either or both of these conditions.

I thought we'd take a poll.. for this member.

So how many of you have these symptoms ?

[Athenaa21]

I have tinnitus and Fibro as well; I have started a support group on Facebook called "I hate having tinnitus"; you can search and find me there!  Tinnitus is very common in CFS/FM patients.  It makes me mad it is not included in the list of symptoms.  I have tinnitus with no known cause.  I've had the vertigo too! But it has dissapaited. I've had 2 ENG's to check for vestibular infection and mereiners disease; and have nothing! I too have the pressure in my head and ears; probably from trigger points in jaw and neck which effect your muscles around your eustation tubes that run down your neck (thus the popping and snapping and little sounds we hear) and it can somtimes lead into a migraine type headache; but is not a migraine; its from your neck and your muscles being so taunt. Your traps, clavical, neck, jaw all are inter connected.  This is why sometimes you might tilt your head wrong and it feels like you have pulled a muscle up into your BRAIN!! Lol =)   I also have RLS, but it's calming down.. and the muscle aches in the trigger points I have.  Tinnitus by far is my worst symptom. It started in my left ear, and it has went to the right (fainter; but it;s there)  Articles I have read said this happens over time because our brain gets use to hearing a sound for so long; it starts to mimic it in the other ear; thus must tinnitus coming from overactive nerve stimulation, or without hearing loss; brain realated/non pulsate tinnitus goes bilateral after a short series of time.    I hope this informaiton helps some of you.  I hear crickets and kind of a static white noise. The rule of thumb on tinnitus is if you hear it 3 months, and it hasn't went away.. it won't.  It is not like your typical ear ringing sound. It's a little different.  I can actually have both at the same time.. lol.  I can help you with tips./tricks/ways to cope at my support page, or join MDjunction (it's free; and a support group)  I am Athenaa21 there.. you can add me, or find me on FB at my support page.

[atman]

I haven't heard of Acompansate.   What is it, exactly ?    I have been wondering though, if anyone here has been tested for Lyme disease ?    I have had two tests, both negative, but I've been reading a lot about it online, and the symptoms are very similar to what we seem to have ...... the tinnitus, vertigo, tremors, tingling, etc.   Apparently it's hard to get a clear diagnosis as tests often show a false negative.    Does anyone else have any thoughts on this ?    

[susanjh]

I've been diagnosed with Fibro and have suffered from tinnitus for years: high constant ringing, formerly in one ear and now in both. It's crazy making but not as depressing as the Fibro and CFS. I was in a trial for acompansate sp? but didn't stick with it. Does anyone have experience with the Acompansate?

[MaryStar]

Hi again, I am not succeeding at PT for vertigo. Next stop is back to the ENT doc on Friday of this week. I also am possibly going to see a neurologist if the ent has no new ideas for treatment. I have constant ringing in my ears and have for a long time. Yes, it is really helpful for me also to know I am not alone on all of this. I thank everyone for listening, and offering their thoughts.

[atman]

Hi .....  I am new to this board, and so happy to have found it.    I have had CFS for many years, but my symptoms have changed dramatically in the last while.   I now have severe tinnitus 24/7, and a feeling of soreness or inflammation in my head, especially just above the ears.    I also feel generally "infected" with something, and body aches come and go.   My thigh muscles burn a lot, and I have had tingling, and also the buzzing sensation in my toes at times.    My symptoms have all been very bad this summer, and I was starting to wonder if it's something more serious, like MS.     So it's good to know others with CFS/Fibro have these weird symptoms too.   I thought I was the only one !!     Thanks.  :)

[MaryStar]

I have ringing in my ears, tinnitus, and some vertigo. Also suggestive meneires disease. I am in PT for the vertigo right now. It is rough. anyone else been in PT for any of this?

[mdavis0698]

I've been diagnosed with both FMS and tinnitus.  I don't get the ringing per se, but get a vibrating, hearing my own voice amplified and hearing others less.  I am on meds for the FMS but not the tinnitus.  When stress levels are lower, so are the symptoms.  Go figure.

[FurballsMom]

I have the tingling or peripheral neuropathy.  The doctor says it is idiopathic.  She said my B12 is where it's supposed to be.  Someone told me about some supplements that help her.  I can't take the one she mentioned called Leg Veins from Naturway, because it has herbs in it that I know I'm allergic to.  But, I use Alpha Lipoic Acid that she suggested and it really does help.  She also mentioned Acetyl L Carnitine, but I still have to ask my doctors about that one.  The Alpha Lipoic Acid is an antioxidant and it does seem to cut down the severity of all that tingling.  I haven't had the tinnitus for a while, but I sure can't ignore it when I do get it.  It is really loud.

[bobbilaine]

I have fibro and specialist says meneire's disease as well.  My ears ring and sometimes I lose about half of my hearing or perhaps more.  It can be gone for a couple of days and as time goes by my hearing is getting worse.  I have terrible tingling in my feet which seems to come and go although the last 4 months has been constant and getting worse.  IT IS DRIVING ME CRAZY!  Those who have tingling have you been checked for vitamin B12 deficiency?  When I have the tingling and ringing I also experience a fair amount of muscle twitching and this time muscle tension.  In addition, I have fibro fog (the cognitive issues) when this is happening.  What a dreadful disease!  I always wonder if something else is wrong.  I'm certainly open to suggestions.

[VaBreeze]

I'll send you a PM about your other ? regarding your feet.  

[ginak]

I have constant tinnitus and a constant buzzing in my left foot only. Sometimes I can feel it in my right foot. Is this common? Could the buzzing be a result of fibromyalgia or something more serious?

[VaBreeze]

I hear that.  Mine have never left since the first one began.  Those 'surges' sure are scary though...and no way could I ever close my eyes and remain standing (which not one doctor has ever bothered doing this test).  

I agree...it's the constant variation that makes it hard to cope with.

[dai3symae]

I have both...the tingling is minor and easy to live with.  The tinnitus is loud, high pitched and 24/4.  My balance is off and I always feel like I'm "listing" to the left, sort of like a boat with only one oar.  

[RobinHood70]

Thanks for the suggestions and info.  Ever since this hit, I think the tallest thing I've ever stood on was a chair.  While I do get surges like you describe, most of the time for me, it tends to be something that fades in and out, but is never completely gone.  I've been given various balance exercises and such, and I found that they helped to a point, but I think the variation in severity that I get makes it hard for my brain to fully compensate...it's trying to hit a moving target.

[VaBreeze]

Doesn't it though?  It's incredible how alike these illnesses are.  I'm still not sure...but i'm thinking I have both FMS/CFS.  It's been horrible...the vertigo attacks.  After my first spill down a stairwell, I saw an opthomologist...nothing wrong with my eyes.  Spent a lifetime bumping into things and being tested for this or that.  Nothing helped.  When it happened while I was on the interstate, that was the worst imaginable.  It was all I could do to keep the car in my lane...it was the anxiety from it that caused the overload, lol.  Unfortunately, it took this last loss of balance to do permanent damage and put me on disability.  So you be very careful if you are experiencing this...never stand on something that isn't made for it and secure ladders, etc.  Don't overreach either, lol.  My $1.00 windsock I was hanging ended up costing a mere $280,000.  I understand that they do offer courses on balance training...where they train your brain to focus on it better.  The one here was offered at one of the hospitals.  May be worth checking in your area too.  Be safe.

[RobinHood70]

It sounds like you and I have fairly similar symptom sets, VaBreeze, though yours seem a bit more severe than mine on average.  My tinnitus is 24/7, but the balance problems are not quite as severe for me, though not far from it...I've never fallen, and I can *almost* always walk alone, but all the rest of it sounds very familiar to me and I would definitely say I find the vertigo to be the worst symptom.  On the other hand, I couldn't even imagine driving...there'd be too much balance/direction-information overload, I think, undoubtedly triggering more vertigo.

[VaBreeze]

I will have a ringing or buzzing most days.  Sometimes my ear will feel like it suddenly clogs up and the ringing is severe.  Other times, I may turn over in bed and it feels like I can hear it draining.  

For me, the vertigo was worse than anything.  I had all types of testing done...quite a few times...and nothing was ever found to be wrong.  I misjudge steps and have fallen; had a sudden bout of vertigo while driving (which is scary) and had spells where I couldn't walk alone, but had to be supported by someone.  All due to the balance problems.  It's quite frustrating to not have answers as to what is causing these things to happen.  This began in my teens and continues today.

[RobinHood70]

Just as a comment on drug treatments, I was on Lorazepam (also called Ativan) for a while to help combat the dizziness, and it had a clear effect on the tinnitus as well.  While they were rare, there were some days where I could no longer hear it at all unless the room was silent.  Now that I'm no longer taking it, however, the average volume of the tinnitus has definitely gone up and I think I've only had one such quiet day since.

Of course, the inherent problem with Lorazepam is that it's highly addictive.  Personally, I had little trouble getting off of it when I needed to, but I gather I'm the exception in that regard.  Getting a doctor to prescribe it is fairly challenging, as they're all aware and very wary of the addiction issue and will automatically assume you're drug-seeking unless you do a very good job of convincing them otherwise.

[uk2]

I have tinnitus and loss of hearing and pressure like popping in my ears which is painful and recently had vertigo due to fluid in my inner ear and now on medication to combat that, they say its meneire's disease going to ENT on 2nd of feb and having ENG (balance test) on 31st.

I've heard its progressive, does anybody have fibro and meneire's disease?


Sam

[PlateletGal]

Many CFS patients, including myself, have constant ringing or buzzing in both their ears. I've read that poor health can lead to tinnitus... here is what the treatments are for this condition, although I haven't tried any of these:

http://www.ata.org/professionals/tinnitus-treatments

[patsy10]

I have both and many other symptoms.  It's true about people rolling their eyes up.  I work in healthcare and every time someone who had FMS would come in I would see co-workers rolling they eyes up.

[ott70]

Not sure about the tingling, but I will get tinnitus. Sometimes I think an attack is going to occur because some pressure will build up and then some loud ringing will occur in one or both ears. Usually subsides after 10-20 minutes. Weird stuff.

[lvfrogs]

I don't have tinnitus but have had some tingling. I do have the balance problem though, like VaBreeze and have noticed that getting worse.  I thought it was just my body getting older. I learn something new here everyday!

[Mage1970]

I've always been told that the Tinnitus (Which I've had since I was 12)follows the migraines,so which symptom/s preceedes???Another question is which type of Tinnitus do you have ???