Ear Tinnitus and Pain with Neuropathy

I have SFN and autonomic neuropathy (idiopathic) and also have ear pain and constant tinnitus. My neurologist didn’t initially associate the tinnitus with the neuropathy but I didn’t specifically ask, just mentioned it. I will ask when I see him again. I’ve had chronic headaches for 20 years now (I’m 44). My neurologist did brain MRI and EEG but found no neurological condition attributing to my headaches. I take Amitriptyline but the ear pain/tinnitus stared long before I stated Amitriptyline. I have taken IBUPROFEN almost every day for years because of the headaches and the widespread pain. It doesn’t help much but sometimes takes the edge off the headaches. I know it’s bad to take and my neurologist wants to ween me off IBU, he said it’s probably the reason I get headaches now (similar to caffeine, your body is used to it, when you stop, it gives you a headache).

I have Middle Ear Movement - a form of tinnitus . I feel that there is a bug crawling in my ear. Then it triggers a migraine.
Went to ear doctor and neurologist . They put me on gabapentin . The side effects were awful. I had to stop. So I checked around for a solution. I am using tea tree oil with a little olive oil ,and put a small amount by an eye dropper in ear at night. In the evenings I apply a warm compress to ear. Gradually the tingling and headaches have subsided greatly. Usually get a sharp headaches but leaves quickly. Stopped even tylenol. So from constant ear tingling&headaches to a a mild and quick occurrence maybe 2 times a day. I can live with that.

If you have severe tinnitus, I would recommend asking for brain angiogram typically done by intervention radiologist of neurologist. MRI/MRA/MRV doesn’t show DAVF well or at all like in my case back in 2018.

Thanks for the information. They did see DVA in the MRI. I just looked up DAVF and I have all of the symptoms except seizures. Although my neurologist suspected I was having seizures but didn’t find evidence of it in the EEG. I will talk to him about DAVF. Thanks again!

Ibuprofen is a non steroidal anti inflammatory NSA. Unfortunately they can cause serious tinnitus. I have had to discontinue their use because it made my tinnitus worse. The same goes for aspirin. Tylenol is preferred for me at any rate. Not as strong as ibuprofen though. Tylenol 1 or 2 contains codine, another no-no for us poor folks with the never ending noise of tinnitus. Amitripyline has also been flagged as a possible culprit but I find it’s ok for me. Have you tried cannabis for your headaches?You can get a prescription from your doctor for it that doesn’t include the recreational drug effect.

@willows Hi. Thanks for the insight. The tinnitus started before the Amitriptyline but it could certainly be the IBU as I've taken that for several years. Along with the tinnitus, I have rumbling in my ears and can hear my pulse as it rumbles (hard to explain the noise) and blurred/double vision. I have a telehealth appointment with my neurologist this afternoon and will talk through all the possible scenarios. I'd hate to do a brain angiogram if I don't need to but also want to be thorough. I have a CBD/THC blend that I take occasionally to help me sleep. It doesn't give me any of the "high" and since it helps me sleep, I can assume it helps my headaches too. 🙂 I can't take it during the day though because it interferes with my workday. I also tried the Emgality injection for my headaches but it didn't have any positive impact.

Good luck with finding the source of the tinnitus

Wow, yeah … I've been dealing with the same type of tinnitus as you, along with many debilitating symptoms from both Autonomic & Peripheral Neuropathy. After the 2nd year of symptoms, I started seeing specialist, unfortunately receiving no help with resolving anything. Now into my 6th year I have reached the pinacol of being able to live with my symptoms, yeah basically throwing in the towel … It seems that the medical field has almost no knowledge in isolating causes and/or treatments with neuropathy. It seems this Neuropathy is a total mystery to the medical field. Over the past 6 years, I've gotten much worse with no relief 24/7. Recently, over the last few years, COVID has totally taken over the medical field in Michigan leaving everyone else with no hope for future relief. I hope you have much better success than I have.

@usadavidh I’m so sorry to hear you’ve not been able to find any relief. I truly empathize. I have small fiber neuropathy and autonomic neuropathy. My doctor says the autonomic neuropathy is the worst of the two and I have to agree. The symptoms are all over the place and it’s hard to treat. We really must be our own health advocates. This forum really helps! May I ask what medications you’ve tried and how you’ve responded to those medications? I’ve had symptoms for many years but was just diagnosed Fall 2021 so I’m still going through the trial and error with medication. I have found that antidepressants are now a must for me. The antidepressants I’ve tried so far serve a dual purpose; they are supposed to help pain too. So far they’re much better at helping me cope than actually helping the pain. Still looking for the right drugs to provide overall relief.
I hope you can find some relief, too. Hang in there ❤️

Tried to edit but it was too late, so here is my revised Reply. Thanks for the reply, it feels good to be able to vent out without feeling guilty and/or judged. It's been awhile since I've tried any drugs, therefore difficult remembering everything I've tried. The one's I can remember are Doxepin, Gabapentin, Amitriptyline, and I believe Nortriptyline. In short, at the time, I didn't receive any relief whatsoever and actually I wouldn't have known I took anything other than the horrible side effects I experienced, like; Drowsiness, Dizziness, Headache, Blurred-Vision, Dry Mouth , and a consistent Upset stomach. In short, I still had ALL the Neuropathy symptoms but unfortunately with the additional side effects added to my plate. Because, I still try to ride or walk several times a week and when I was on meds I couldn't do any type of exercise from the side effects, especially being sick to my stomach. As I said earlier, I've pretty much lost hope for any relief. For one, because it seems medical scientist out there, don't seem to have many incentives to find any answers. Especially over the last few years, the entire world is focused only on COVID, leaving everyone else to shovel-into the scrap heap of bodies without much empathy towards any long-term outcomes. In northern Michigan where I live, the Hospitals over the past 18 months have been pretty much shutdown for normal activity, and running almost exclusively for treating COVID and seems almost forced into other life emergencies like deliveries, myocardial infarctions and strokes. The bottom line, the medical world is operating with "unorganized chaos" ! And you are definitely right, for any hope we must be our own physicians... That I have .... without any success.