I am not dx'd as of yet, but have been worked up for MS and being worked up for Lyme currently. However, I have both conditions.
I have FM symptoms, but not been given dx, per se. The tinnitus is 24/7, but the hyperacusis occurs sporadically when I'm feeling a dizzy headache feeling.
My ears ring all the time, however sometimes it's much louder. I don't know for sure if it is from the FMS but I tend to think it may be.
I also have pulsatile tinnitus. This is more of a whooshing sound or a sound of my heartbeat. Because of my lack of a dx, I don't know what it is.
Is the pulsing the same frequency as your heart beat? Mine is ~ 3x faster than my heart beat, it is the same frequency as my visual snow (~ 200 bpm).
When my hyperacusis is at its worst, my own voice hurts my ears, and of course, sharp noises -- like a fork hitting a plate -- are painful.
I have fibro and tinnitus. The ringing is 24/7 and is much worse in my left ear. I was dx'd with fibro years before the tinnitus developed.
I'd never heard of hyperacusis....however certain noises (piano symphany music for example) makes me very anxious as does static on the radio.
I had to look up the definition of hyperacusis. Sounds like me alright. And, I've had tinnitus off and on since I was a kid. I recall the age when I was getting chronic ear infections. I would almost always get tinitus right before getting another ear infection. I'm still in limbo with diagnosis, but my doctor did tell me a few years ago that I was a borderline case. I still get some really intense tinitus at times, and it seems like it coincides with some of my migraines. I get a lot of migraines, so that means I still get a lot of tinitus.
I've had hperacusus and tinnitis for the last 4 years or so (I've had fm for 14 years) and didn't know they were symptoms of fm until last fall! I'm still learning...
CFS dx here.... I also have hyperacusis & tinnitus.
yes always had the tinnitus but recently am very sensative to noise..,.i always loved going to live gigs. but the last one annoyed me to bits. shame!!
I have tinnitus and Fibro Diagnosis.. To those with pulsaite tinnitus/wooshing.. you really need to make sure you go see a neurologist.. this can be signs of something serious; I am not trying to scare you; but that type is linked to vascular issues. I have good ole' cricket white noise in both ears, 24/7. I have started a support group for tinnitus sufferers on facebook, along with links to informaiton, tips, tricks, and a place to just plain vent and ask questions! lol; it's called "I hate having tinnitus". You can simply search and find it!
Tinnitus is commmon in people with Lyme, Fibro, CFS, and loud noise exposure. There are tests to determine which type you have, and if it is related to any other ear ailment or damage; vestibular infection, mereineres disease; etc. once you pass your ENG test, and you have no known hearing loss or noise exposure it's pretty much your brain folks.. and it's based on the same principle as fibro; overstimulation of nerves.. what you hear is neurons communicating.. (not their actual sound, but the result of)
Also TMJ can cause tinnitus, as well as trigger points/neck issues can cause it.. so with Fibro.. it's like a triple threat!
absolutely! Have had tinnitus for years, but came down with a bad ear/sinus infection in november. 2 weeks later still had the problem: heaviness in sinuses and ear, sensitivity, pain, hearing my own voice at times, popping,etc. Did ct scan of the sinuses, all's well there. straight to the ent who scoped ears and sinuses and saw no infection. Audiologist who found a 5 decible loss in the left ear over 3 tones, to a MRI of brain and inner auditory canals (of course normal) and the dx of it's my fibro! To the point of not going to the doc with any new symptoms, cause it costs me too much and only comes up as some new and twisted place fibro is invading!
I have pulsatile tinnitus and fibro. Didn't go to neurologist but did see and ENT and he said after the CT scan that I am fine but need to live with the tinnitus. Also have some hearing loss.
Yes to hyperacusis but tinnitus only rarely. I've had FMS symptoms since I was a child, was diagnosed in 1993 and in more recent years the hyperacusis has become a much more serious problem. It's accompanied by hyper-visual sensitivity, brain fog and memory impairment and all of these are particularly bad when I wake up in the morning. They slowly dissipate (if I'm lucky) over the course of the day.
People need to know: In the '90s FMS was always seen as a SYNDROME with @ 12 symptoms that everyone with FMS has most of. Now in more recent years, thanks to the ignorance of doctors FMS has become a blanket diagnosis for anyone with chronic pain, which is ridiculous and not at all helpful! The reality is that there are a number of different pain syndromes and doctors just aren't educated on them! I used to read the FM Network Newsletter (a quarterly that looked worldwide at research on FMS) regularly and learned a lot from it; you can still order back issues:
An FMS doctor in Connecticut has done SPECT scans on FMS patients and found that our brains are different than other people's: we have a hyperactive sensory cortex (thus the hyperacusis, visual & touch sensitivity and acute taste and smell faculties many of us have); meanwhile the rest of our brain is underactive (thus issues with the vagus nerve like not breathing adequately which is connected with nerve signals to the diaphragm, and not having adequate peristalsis signaled and thus inadequate elimination of the bowels). This is serious and yet the doctors are not on it; unfortunately our medical model has been developed and overseen by Big Pharma so we get doctors who mostly know how to push drugs that mask symptoms, which is known as "palliative care." The only ones I know of who understand chronic illness and the body adequately to actually HEAL people are doctors of functional medicine, so if you can afford to go to one I urge you to do so! Wish I had the funds...
Re: hyperacusis, I've been helped somewhat by cooking with turmeric and taking it in capsules, by taking resveratrol, and also by taking Methyl Folate (most of us have 2 or more of the 4 MTHFR gene protein SNPs -- "mutations" -- as well so our methylation is inadequate; this is a primary bodily function). The turmeric and resveratrol are 2 of only 4 substances that can travel through the Blood Brain Barrier into the brain and they are both natural anti-inflammatories.
Also, as far as what has helped in a real way without side effects, the only thing has been 16 to 20 weekly acupuncture sessions; twice now this has helped me to get about half better. Then you have to keep going once a month or so. I highly recommend this.
Yes I had horrible ringing of the ear(s). Saw an ear audiologist and she told me that I had hearing loss and tried to sell me a hearing aid. My hearing is just fine, actually too fine because I am very sensitive to noise and would welcome a bit of hearing loss.
What I did find was when I was taken off Cymbalta the ringing stopped. It was a side effect of that medication. If you are on medication check the adverse effects and see if it is the culprit.
I have fibro and 24/7 tinnitus, I never had that issue before, but one morning, I woke up, and there it was, just like other fibro symptoms. I went to my GP, he wasn't in the least concerned, he said if it got worse I might need a hearing aid to help stop the noise. On some days, it doesn't bother me as much, but when I am in a quiet room or alone, I really notice it. I told my chiropractor about it, he said that unfortunately, there wasn't much he could do, that his wife had it as well. I am not on any prescription drugs, so at least I know they aren't contributing, but, I am under extreme stress, and this can cause the ringing to flare up worse at times as well. I am fortunate that I have not experienced any hearing loss, hopefully that won't happen.
As to the hyperacusis, I don't have that, at least yet.