Seeking Support & Answers

[Anon123456]

Hi everyone! I am new to the forums. I'm seeking a space where I can receive understanding and non-judgmental support from others with this baffling and annoying issue. So, below is my story.

I developed the whooshing sound in only my right ear this past September (2013) about 2 weeks after beginning 100mg/twice per day dose of Minocycline for acne. At first, I thought I just needed to have wax removed, and didn't correlate it with taking a new drug until later. The drug also made me dizzy, spacey, have balance issues and headaches, plus weird visual obscurations, so I stopped after about 4 weeks. I know this form of tetracycline is ototoxic, but could it really damage my hearing in a couple weeks?

Days before stopping, I came down with mononucleosis. A minute clinic physician prescribed me augmentin which gave me a rash. Additionally, my lymph nodes were HUGE, I had high fever, and my throat was swollen to the point where I couldn't breathe, so my actual doc gave me a steroid, and my mono symptoms improved, or really, disappeared in 3-4 weeks. The fatigue didn't last months like they told me it would.

Obviously, I was still left with the pulsing. My dermatologist told me it would go away since I stopped the drug. She was wrong. I started aggressively treating this a month ago. My ENT at first told me to "live with it" but after much research I learned it could be unnecessary and dangerous. So I went for an MRI thinking it was intracranial hypertension from the Minocycline. The results were negative. The only things found were an 8mm developmental cyst near my left TMJ, partial opacification of the floor of my sphenoid sinus, and lesions on the parotid gland from intraparotid lymph nodes (most likely from the mono).

After that, I recently went for a carotid Doppler because the sound stops when you press on my neck underneath the right ear. It is subjective though, as my doc could not hear it with his stethoscope. This, too, came back negative. My ENT is not taking any further action so I have still not solved anything!

What bothers me the most is I have never had hearing issues prior to this, it just came on suddenly one evening. It disrupts me from falling asleep, reading, or meditating. When I am outside I don't notice it as much, but I also have dizziness and TVO where everything gets dim and grainy for 2-5 seconds when standing up from sitting or laying down. I've always had this, but not to the frequency I have it now.

The only other things I can think of is that I still need my top wisdom teeth removed, and years back I was borderline hyperthyroidism.

If anyone has any suggestions or advice, I would appreciate your help! Thank you!

 

[Karen]

Hi, Anon123456,

I read your post with great interest, since my whooshing started about 2 weeks after taking a drug, too. In my case, however, I already had mild tinnitus and some hearing loss.

My pulsating started after taking a blood pressure drug. It was about 2 weeks after I had been taking it, and there were a lot of bothersome side effects from the drug I was taking, including rapid pulse, aches and pains, dizziness, etc.

A couple of questions for you:
1. Have you had your hearing tested by an audiologist to determine if you now have hearing loss?
2. Is your primary care physician still treating you, and have you been back to him for a follow-up since you had the mono?
3. Since your ENT is no longer treating you, have you tried seeing another doctor, such as a neurotologist?
4. Have you been to a dentist or TMJ specialist regarding the cyst near your TMJ?

I am still trying to find the cause of my pulsating, too, so I don't have a lot of answers. Pulsatile tinnitus may have many causes, and some of them are treatable. It would be good if you could be thoroughly checked out, just to be sure there are no other issues.

I've had an MRI, CT scan (without contrast), and carotid Doppler. If I do go back for more tests, the next one I would consider would be a CT scan with contrast, to see if anything else could be detected. My neurotologist would be the one to order that test for me.

If you haven't already done so, you might want to check out Whooshers.com. This website has a lot of information about pulsatile tinnitus and its various causes, plus information you can take to your doctor on your next visit. There is also a Whooshers.com support group on Facebook that you can join.

I wish you well, and am glad you joined us on Tinnitus Talk!

Best wishes,
Karen

 

[Anon123456]

Hi Karen! It's great to read about your experience, as I have had many similar questions as yours.

1. Yes, I tested as having minor loss in low audible tones on both sides. But honestly, that was only because I couldn't hear over the whooshing during the test. If I had pressed my neck during it, I guarantee I would've had different results.

2. My primary doc said to follow up in a month as I saw him a few weeks ago - he did not seem particularly concerned about me having mono 5 months ago. He only noted that mono and similar infections can damage hearing, too. Although.. the MRI of my auditory canals was fine and it's only on the right side.

3. I have an appointment with a neurologist scheduled for May, but obviously that's a month away. :/

4. I just saw my dentist this week and they looked at my X-rays from September, though didn't note anything about a cyst. I am going to an oral surgeon for a consultation about my wisdom teeth soon, so I intend to bring this up then.

I agree.. I would like to exhaust all possible options. Hoping the neurologist or oral surgeon have more info for me, especially since I feel this can be treated! Thank you for linking me to whooshers! I have poured over their page extensively haha, but I will definitely refer my doctors to the info on there. I appreciate you taking the time to reply! Thank you, and I also hope you find relief soon!
Anon123456

 

[attheedgeofscience]

Hi everyone! I am new to the forums. I'm seeking a space where I can receive understanding and non-judgmental support from others with this baffling and annoying issue. So, below is my story.

I developed the whooshing sound in only my right ear this past September (2013) about 2 weeks after beginning 100mg/twice per day dose of Minocycline for acne. At first, I thought I just needed to have wax removed, and didn't correlate it with taking a new drug until later. The drug also made me dizzy, spacey, have balance issues and headaches, plus weird visual obscurations, so I stopped after about 4 weeks. I know this form of tetracycline is ototoxic, but could it really damage my hearing in a couple weeks?

Days before stopping, I came down with mononucleosis. A minute clinic physician prescribed me augmentin which gave me a rash. Additionally, my lymph nodes were HUGE, I had high fever, and my throat was swollen to the point where I couldn't breathe, so my actual doc gave me a steroid, and my mono symptoms improved, or really, disappeared in 3-4 weeks. The fatigue didn't last months like they told me it would.

Obviously, I was still left with the pulsing. My dermatologist told me it would go away since I stopped the drug. She was wrong. I started aggressively treating this a month ago. My ENT at first told me to "live with it" but after much research I learned it could be unnecessary and dangerous. So I went for an MRI thinking it was intracranial hypertension from the Minocycline. The results were negative. The only things found were an 8mm developmental cyst near my left TMJ, partial opacification of the floor of my sphenoid sinus, and lesions on the parotid gland from intraparotid lymph nodes (most likely from the mono).

After that, I recently went for a carotid Doppler because the sound stops when you press on my neck underneath the right ear. It is subjective though, as my doc could not hear it with his stethoscope. This, too, came back negative. My ENT is not taking any further action so I have still not solved anything!

What bothers me the most is I have never had hearing issues prior to this, it just came on suddenly one evening. It disrupts me from falling asleep, reading, or meditating. When I am outside I don't notice it as much, but I also have dizziness and TVO where everything gets dim and grainy for 2-5 seconds when standing up from sitting or laying down. I've always had this, but not to the frequency I have it now.

The only other things I can think of is that I still need my top wisdom teeth removed, and years back I was borderline hyperthyroidism.

If anyone has any suggestions or advice, I would appreciate your help! Thank you!

You are obviously someone putting forward a real effort in trying to "get better". It is beyond me to comment on most of what you have written (ie. it is all "medical stuff"); there a few doctors on this board you could ask, however (Dr. Nagler, Dr. Ancill, and possibly one or two others). But of greater importance, I think, is - now that you have tinnitus, what can you do? Most (+90%) tinnitus is cochlear induced. There is a certain window of opportunity where a course of steriods can be helpful (oral, intravenous, intratympanic) - but in your case, I would say that opportunity has come and gone (ie. it needs to be administered shortly after onset of tinnitus). So if you really want to help yourself, I would try to get involved with the AM101 clinical trial (which is a drug for cochlear induced tinnitus of acute and sub-acute/chronic tinnitus patients having had tinnitus for up to one year). Contact them and find out if you are a candidate for treatment (it sounds as if you might be). Member hudson on this board can probably provide you with some options on how to contact Auris Medical and/or the clinical trial centres around the world.

Was it the Minocycline that caused it? Hard to tell. The really ototoxic antibiotics are the ones where the product name ends in -mycin (eg. neomycin, vancomycin, and so on). But I would say that to be on antibiotics for a four weeks is a longish time. A course of wide spectrum antibiotics should be kept as short as possible, needless to say - and four weeks is "not ideal", in my non-expert opinion. The fact that you have dizzy spells along with the tinnitus could suggest ototoxicity (again in my non-expert opinion).

Take care.

 

[Anon123456]

Hi aththeedgeofscience,

Well, I imagine most people on this forum are making an effort towards improving their tinnitus. I was on a steroid - Prednisone, I believe - about a week after the onset (for my mono), so there really wasn't that large of a gap in time.. Though I don't know if that could have helped it. I appreciate you giving me the info about the clinical trial, that definitely sounds like an option and I will look into it!

I'm not saying it was necessarily the Minocycline, I just find it strange that I did not have any issues prior to being on it. I am not a fan of being on any kind of drug even short-term, however, my dermatologist seemed to think this antibiotic was the next best treatment. My brother, for instance, was on the same drug for 6 months and had no adverse effects. Now that it's all said and done though, and I have done my research, I wish I had never taken it.

Again, thank you for letting me know about the clinical trial!

 

[Karen]

Anon123456,

I'll be interested to hear what your doctors have to say about your condition. Mine is in my right ear, too, and I got off my drugs about 3 1/2 years ago. My tinnitus has improved a bit, but I still have both the pulsating and a high-pitched hissing type of ringing. Do you have regular tinnitus as well as pulsatile tinnitus?

Good luck on your search for some answers!!

Karen

 

[Anon123456]

Karen -
Me too! I have to admit I am pretty stubborn about this, and can't swallow the "you'll just have to live with it" diagnosis.

3 1/2 years is an awfully long time I do not experience regular tinnitus ringing or any other sounds, just the sound of blood whooshing in sync with my heart.

Thank you! I hope your symptoms continue to improve, too.

 

[Karen]

Yes, more than one doctor has told me "You'll just have to live with it", and I have not given up hope that there will be some type of improvement or cure, at least for the pulsating. I may really have to "live with" the hissing sound, but I am trying very hard to ignore it and live as normal a life as possible.

It's possible that yours will subside over time. I truly hope it does, or that you'll find some answers soon. Stay strong, and good luck. And please do keep me posted on how you're doing!!!

 

[attheedgeofscience]

Karen -
Me too! I have to admit I am pretty stubborn about this, and can't swallow the "you'll just have to live with it" diagnosis.

3 1/2 years is an awfully long time I do not experience regular tinnitus ringing or any other sounds, just the sound of blood whooshing in sync with my heart.

Thank you! I hope your symptoms continue to improve, too.

Your condition is tricky to diagnose (and I am not a doctor). If it's a structural problem such as problems with blood vessels, then the AM101 clinical trial is unlikely to help you. However, since you got the symptoms while on ototoxic drugs - and given that most tinnitus is due to cochlear damage - I would still argue that this is the most likely cause. But, as mentioned earlier, I would ask @Dr. Nagler for his advice...

 

[here2help]

Anon123456, my suggestion is that you try to turn your attention away from the past and toward the present, away from the elusive cause of your tinnitus and toward steps you can take to begin to manage tinnitus.

The drug you were prescribed, a semisynthetic derivative of tetracycline, is one of countless prescription drugs that lists tinnitus as a side effect, but the number of reported cases of tinnitus for each of these drugs is miniscule and the side effects nearly always go away after discontinuing the drug. There is likely no more reason to suspect minocycline caused permanent tinnitus and hearing loss than to suspect it caused mono, which you also developed while taking the prescription.

Only a small number of drugs have been shown time and again to cause tinnitus. Aminoglycoside antibiotics can be ototoxic when the amount of the drug in the bloodstream exceeds the drug's therapeutic range, possibly damaging the outer hair cells. Quinine and other antimalarial agents, loop diuretics, and cytotoxic agents such as cisplatin can also be ototoxic. Aminoglycosides and cisplatin are typically used for life-threatening circumstances.

The search for a definitive cause for tinnitus can keep us deeply engaged with tinnitus, so one other suggestion is that you consider setting an end date by which time if you are unable to say with certainty what has caused your tinnitus you will turn your attention to steps you can take to manage the condition.

here2help

 

[mynamewastaken]

Hi everyone! I am new to the forums. I'm seeking a space where I can receive understanding and non-judgmental support from others with this baffling and annoying issue. So, below is my story.

I developed the whooshing sound in only my right ear this past September (2013) about 2 weeks after beginning 100mg/twice per day dose of Minocycline for acne. At first, I thought I just needed to have wax removed, and didn't correlate it with taking a new drug until later. The drug also made me dizzy, spacey, have balance issues and headaches, plus weird visual obscurations, so I stopped after about 4 weeks. I know this form of tetracycline is ototoxic, but could it really damage my hearing in a couple weeks?

Days before stopping, I came down with mononucleosis. A minute clinic physician prescribed me augmentin which gave me a rash. Additionally, my lymph nodes were HUGE, I had high fever, and my throat was swollen to the point where I couldn't breathe, so my actual doc gave me a steroid, and my mono symptoms improved, or really, disappeared in 3-4 weeks. The fatigue didn't last months like they told me it would.

Obviously, I was still left with the pulsing. My dermatologist told me it would go away since I stopped the drug. She was wrong. I started aggressively treating this a month ago. My ENT at first told me to "live with it" but after much research I learned it could be unnecessary and dangerous. So I went for an MRI thinking it was intracranial hypertension from the Minocycline. The results were negative. The only things found were an 8mm developmental cyst near my left TMJ, partial opacification of the floor of my sphenoid sinus, and lesions on the parotid gland from intraparotid lymph nodes (most likely from the mono).

After that, I recently went for a carotid Doppler because the sound stops when you press on my neck underneath the right ear. It is subjective though, as my doc could not hear it with his stethoscope. This, too, came back negative. My ENT is not taking any further action so I have still not solved anything!

What bothers me the most is I have never had hearing issues prior to this, it just came on suddenly one evening. It disrupts me from falling asleep, reading, or meditating. When I am outside I don't notice it as much, but I also have dizziness and TVO where everything gets dim and grainy for 2-5 seconds when standing up from sitting or laying down. I've always had this, but not to the frequency I have it now.

The only other things I can think of is that I still need my top wisdom teeth removed, and years back I was borderline hyperthyroidism.

If anyone has any suggestions or advice, I would appreciate your help! Thank you!

Your story sounds a lot like mine. Unfortunately, intercranial pressure cannot always be seen on an MRI. I've had a few, and only several years later after having a lumbar puncture, did I find out that my pressure is elevated. I too was taking minocycline for acne when my pulsatile tinnitus first started back in 2006. After a bad reaction to it after taking it for some time, I was told I was allergic to it, and should never take any medication in that family again.

 

[Karen]

@mynamewastaken,

So, after the lumbar puncture, did you receive any sort of treatment for the IIH? And do you still have the whooshing? It would be good to hear from someone who was actually cured of their whooshing. It would give me hope!

 

[Ricky81]

I had high intracranial pressure after I was assaulted all over my head.
I got lumbar puncture and it brought my pressure down from 33 to 13.5
Normal range is 10 to 15.

My t lowered and it helped a little, lumbar puncture also helped with vision and head pain.

 

[Karen]

I'm glad to hear that, Ricky. So, how are you feeling these days? I hope that bringing the pressure down has helped you long-term to feel better.

Thanks for the update!

Karen

 

[Ricky81]

Yes.. lumbar puncture is a life saver.

My T has reduced in volume after lumbar puncture.
My doc gave me medication to keep intracranial pressure down because it can go up again.