Tinnitus?

[Ayaju]

I don't see tinnitus listed anywhere under symptoms. Mine is definitely a symptom of CFS because it started along with all the other symptoms when I was stricken with CFS. I have constant ringing in my ears; it never ever stops. It's been going on 16 years, and is a symptom that's rarely mentioned, and all the doctors I've had over the years don't talk about it.

I'm wondering if most pwc's have tinnitus? And if there is help for it? It often drives me nuts; I can't get any peace and silence EVER except when I'm sleeping, so then I don't get to notice it!

Judy

 

[Sea]

I've had tinnitus pretty bad as long as I've been sick. It gets worse with migraines or colds and improves back to baseline when they're gone

 

[roxie60]

I have had 24x7 tinnitus since January 2009, constant, sometimes just annoying other times maddening loud. I have seen in one some lists of symptoms. I had got it a couple times starting in 2006-2007 but it went away after I started getting better and got off meds. Just another tortuous symptom to deal with daily.

 

[Little Bluestem]

My tinnitus did not appear until several years into my ME.

Have you been tested to be sure that you do not have a brain tumor or something else treatable?

Ginko Biloba helps mine. 40 mg, 3X/day was better than 60 mg, 2X/day, when I could get it. I think MSM also helps it.

 

[Firestormm]

I was reading - skimming really because it was late - Marco's article on Health Rising last night. He mentions Baclofen and tinnitus in passing as something it can help treat.

When I was hit by a parvo-virus way back when, I also suffered a labyrinthine infection that appears to have messed up my balance and led to nausea and tinnitus. It could all have been part-and-parcel of everything including the subsequent encephalitis and ME though - hard to really tell without specific and definitive testing.

Anyhoo... I have been taking Baclofen primarily as a muscle-relaxant to ease the aches and pain and reduce the frequency of involuntary muscle-spasms; and Betahistine dihydrochloride, for the inner-ear shennanigans and vetigo-induced-nausea. At least that was what I had been led to believe/what I can remember

The ear-related issues are much improved compared to those years initially when I had no treatment including the tinnitus. It is interesting to me that Baclofen might have also played a role here when it wasn't primarily prescribed for that. Then I also was not aware of this 'neuroinflammatory' role either. Quite fascinating really how these drugs can perhaps be doing more of benefit than the patient really knows.

I have to say, also, however that my mental state is also much improved from those early years of major stress due to illness; and I do think this cannot be ruled out as a possible contributing factor to auditory phenomena and nausea etc. But all the medical diagnoses were made by Consultants and GPs - it's just my own feeling looking back.

The thing that Baclofen has helped less with is actually the muscle aches and pains - it like my other drugs - merely 'takes the edge off'. Talk about irony

 

[Ayaju]

Interesting posts; and I don't feel so alone anymore. Thank you!
I have yet to find a doctor who will even talk to me about tinnitus let alone try to help me! LOL! 16 years with this dd, and I only just found my first doctor who understands about CFS: Dr. Chia.
For me personally, I've always shied away from drugs; I just don't trust them! I was basically forced to take Synthroid, and am convinced, 20 years later, that it made me and my thyroid much worse! mercola.com confirms this. Now I'm taking NatureThroid for hypothyroid and Hashimotos.

OH WELL, let the ringing continue! I can just pretend it's a chorus of angels.

Judy

 

[Seven7]

I have some heavy duty noise or whatever in brain is mine not in ear.

 

[roxie60]

yes, I think the tinnitus is related to the brain. I can push in on my ears to block sounds and still hear the metallic hiss, sounds like cicadas .....

 

[Little Bluestem]

Your right, it does sound like cicadas! I had never before noticed that.

@Ajaju, and Ear, Nose, and Throat specialist (ENT) should that tinnitus seriously. If she cannot find the cause, she should refer you to a neurologist. They can eliminate certain treatable causes of tinnitus, but they may not be able to find a cause. They did not in my case.

 

[kendray4]

Yes tinnitus should be taken seriously. it needs specialist assessment and investigation. I do not think that it is an expected symptom of CFS. Tinnitus can be treated, there are numerous treatments for tinnitus, but they may take time to work. To read more about tinnitus treatment and assessment please see:
enetmd.com/content/tinnitus-treatment

 

[Bluebell]

I think, though I'm not 100% sure, that tinnitis is listed as a symptom of B12/folate deficiency -- and a subset of CFS-ME patients do have big B12/folate problems (according to Dr. Rich van Konynenburg, etc.)

I get tinnitis from ibuprofen and other NSAID drugs -- ibuprofen causes tinnitis and/or hearing damage in 1% of people who take it, I later learned (by reading the leaflet that came with my bottle!)
1% of the numbers who take ibuprofen is a LOT of people. I avoid all NSAID painkillers now, including aspirin.

When I was prescribed glaucoma eye drops, they gave me tinnitus immediately.

I have read where some people have linked using sensitive-teeth toothpaste to tinnitus because the nerve blockers that work on the teeth can travel that little way up the ear canal and affect the cells there too. I don't know if that's true or not.

When I've mentioned to doctors that I sometimes have tinnitus, they didn't seem to care at all. Sometimes when they prescribed NSAIDs for something, I would say that I try to avoid taking them because they make my ears ring, and they still wanted me to take them, and just shrugged when I said I'd rather be cautious and not take them. I don't understand that nonchalance about tinnitus.

 

[WillowJ]

I can control my tinnitus by strictly avoiding excitotoxins. Right now I have some, I think because my vitalyte is starting to get clumpy. I didn't use enough of it, lol.

Tinnitus can be a sign of other diseases, some of them important and some of those treatable. I agree that you should definitely have it checked (keep trying docs until you find one who takes you seriously). They won't always find a cause, but they should check before telling you it's ok (or ignoring the symptom).