High pitched ringing, pulsating, migraines, clicking, and so on! Help?

[Hannah Chase]

Hey all, my name is Hannah. I'd like to start off by saying I've had tinnitus for a year but I've never actually spoken to someone with tinnitus about it so I'm looking forward to speaking with people who actually understand.

I have no idea how the tinnitus started. Usually the cause is hearing loss but I've been tested for hearing loss twice since going to the doctor and my hearing is perfectly fine. Took thyroid tests, did an MRI scan, and more, and so far nothing. I have high pitched ringing and can also hear my pulse, and it sometimes gives me migraines and nausea. I also sometimes hear clicking in my head, but usually only when I'm jogging or doing vigorous exercise. I have ringing in both of my ears. My left ear is a lot worse than my right ear, not in terms of the ringing, but I get pain in my left ear and I can feel pressure in it whenever I swallow food and water. And I don't know if this has any significance but my left nostril is swollen, I just imagined that's because there's something going on with my left ear and it's connected to my nostril. Since the tinnitus started, I breathe a lot better out of my right nostril than my left one. Has anyone experienced this? I've read a lot of stories about people with tinnitus but none of people who also get the other symptoms I mentioned. I've also gotten vertigo but it's rare, it doesn't happen often. If anyone knows anything, please let me know! Not to mention, I'm only 19 (it started when I was 18) so it concerns me that it's happening so young.
I'd also like to rant and say doctors are useless! I wish I could have found one doctor who took me seriously and actually wanted to help me before my insurance got cut off. (I had Molina and they cut you off once you turn 19). Now that I no longer have insurance, I don't know how I'm going to get help but that's a different story. Anyway, this seems like a minor annoyance to other people but they don't understand how unbearable it can be, not even doctors. I saw my primary care doctor about it and she didn't help, switched doctors because I moved and she thought of some possible causes but turned out they weren't the cause so she referred me to an ENT doctor. I went to him and he ordered the blood test and MRI, when that didn't help he referred me to a neurologist. I drove 2 hours to see the neurologist and he didn't help me at all, this was after my insurance was cut off so now I have to pay him $505 for literally doing nothing! He made me feel uncomfortable from the start, he was just very rude, and I started crying as I was trying to describe the tinnitus to him. Because I cried, he disregarded everything I had said and told me he thinks I have depression. Had I not started crying, perhaps he would have actually tried to help me further. I mean, he didn't even look in my ears which you would think he would since that's what my problem is! He didn't even pay attention to the fact that I have more symptoms than just ringing in the ears. Depression, my ass! I do not have these symptoms because of depression, I don't even have any symptoms of depression. However, it does make me depressed at times but that doesn't make me a depressed person, I get depressed because I have tinnitus; I don't have tinnitus because I'm depressed. Why is it so difficult to find a doctor who truly wants to help you? It's just so overwhelming!

 

[attheedgeofscience]

A good number of tinnitus cases are idiopathic (= no known cause). Having said that, the real cause cannot be diagnosed unless a proper hearing test is administered (one that goes beyond 8 kHz, which is the standard that audiologists use because they are only concerned with the speech frequencies). It is like an internist who only examines the left side of the heart and from that concludes that, the right side is also okay...! So whether or not you actually have hearing loss is difficult to say; +90% of all tinnitus cases are inner ear related, but this is often underdiagnosed.

I agree that doctors often do not understand the seriousness of tinnitus - nobody does until they have experienced it. I also share your concern about being so young. If you have not been listening to loud music, been on a course of broad spectrum antibiotics, or NSAIDs, then you could be suffering from Menieres - but that usually affects the lower frequencies first...

 

[Jade]

Hey Hanna,

Wow girl your young you poor chicken Hudson who is also on tbis forum he got his T at 17 if I remember correctly. I know how you feel hun with medical professionals taking the piss and not even treating your experience and T with professionalism and trying to get you out tbe door as they have instantly marked you in the "incurable bordering looney" basket. I too feel your pain it bappened to myself however I have only been to A doctor and that was enough humiliation and doubt I needed to hear cor a while, however like you I have otber symptoms so I need to see someone who is actually goinv go treat me with some dignity and investigate. ... I have ot had MRI, bloods done or any test what so ever since my T so maybe next time I fly home for work I should make it a priority. I have found this site to be amazing for me it helped me not to feel alone and the forum has a massive array of support and alternative resources that are very interesting, hope your having a good day and loom forward to hearing more from you

 

[Karen]

Hi, Hannah, and welcome!

I have pulsatile tinnitus and ringing/hissing tinnitus, too, and I totally sympathize with what you're going through right now.

I'm so sorry you've had a bad experience with your doctors. Many of us have had similar experiences with doctors; they just do not understand how awful and life-changing this condition can be, and may tell you just to "live with it"!

I agree that, just because you are suffering with tinnitus, that does NOT make you a depressed person! I've had my primary care physician tell me on several occasions to go see a psychiatrist. I don't know what a counselor or psychiatrist could do, other than to listen and then prescribe an antidepressant. Some people do feel that antidepressant drugs help our condition, at least for sleep purposes. If you choose to go that route, it might at least help you in the short-term. Others on this forum have noted that certain drugs do help, at least with sleep, including a drug called Remeron. I haven't taken those drugs myself, preferring go the natural route. I use supplements such as magnesium, melatonin, and vitamins, and they have helped me keep the tinnitus somewhat under control.

Please make sure you keep an extra copy of your MRI and other test results, so that you can possibly circulate those tests to another doctor, or doctors, for a second opinion. On the Whooshers.com website, there is a lot of information available to those of us with pulsatile tinnitus, including information on how to talk to doctors about your condition, stories of cured Whooshers, etc. You might want to check that out, for your own information. There are also a couple of doctors that are recommended (in the U.S.) to whom you could send your tests for review.

It's hard to tell what is causing yours; it may be a sinus-related condition, or TMJ, or something else. At any rate, don't give up! You've come to the right place for information and advice.

Best wishes,
Karen

 

[Per]

@Hannah Chase,

Just wanted to share that most of us don't get assessed properly before we really take personal initiative to find certain or specific medical personal, like a specific doctor that's been taking special interest in T. You should not accept being treated like you have. If I were you I would give them the finger and from now on don't see anyone that doesn't verbally state to you their interest in T, wither it be pulsating/objective T or noise damage T - or any other type of T. If you call somewhere make sure you ask the question: "Do you take a special interest in finding suitable treatment methods for T and/or investigate to find and identify the cause of my T related problems?" If the doctors secretary or the doctor can't give you a confident YES then walk away. You don't need that.

Have you tried to contact any tinnitus associations in your country? They should be able to route you through to doctors or hospitals that has proven to treat and/or diagnose properly. Usually they would know some names on medical people that's interested in our condition. Why not post something here on the forum in regards to your local environment, perhaps someone here lives close to you and has some advice in context of specific doctors or hospitals?

You need someone with experience in this field because most ENT "experts" are afraid of looking stupid because they don't know anything about it. They are happy to treat conditions that are within their own comfort zone, thus meaning traditional stuff like ear ache, removing a pea from a kids nostril and so on. Easy stuff that generates money on a daily basis, that's what they like to do. It creates the least amount of resistance for them and it doesn't challenge anything. When people like us walk into the office we represent a danger to their integrity so they try to lay that burden on us instead! As you have noticed they also try to push it over to someone else, often a psychiatrist or something. When I went to an ENT surgeon he tried to convince me that my physical cramps in my ear was a T sound! That's rather amazing. I lost every respect for him and that made me doubt all the other things he had said during that assessment as well. I later on got in contact with a retired ENT doc. that had worked with the topic for 30 years and he had a completely different approach to this of course.

Keep us posted and forget about those ignorant doctors. They have no clue.

 

[Champ]

@Hannah Chase,When people like us walk into the office we represent a danger to their integrity so they try to lay that burden on us instead!

I think this is what irritates me more. None of them even seem to keep up to date with tinnitus research at all when it's an otolarygologists (ENTs) job their job to understand ears and ear conditions. It's good we have a site like this, because all the old fogies who have been practicing for 40+ years and don't bother to keep up to date won't even know about the cures or effective treatments as they're made.

Good riddance. Bring on the net generation of doctors I say

 

[Per]

@Champ,

One would expect older doctors to be the most experienced and knowledgeable doctors, but in the world of ENT's it's not like that at all. As you write they seem to be stuck in the old days and they have NO knowledge on T whatsoever. It's like talking with a 1979 Motorola mobile phone system. Hello?! Hello? Does this thing work? Have you considered an upgrade lately?