Pulsatile Tinnitus and My History

[Deb]

Hello,

My name is Deb. I have had single low volume subjective tinnitus for quite a few years - not exactly sure when it started. In March/April of this year, the Pulsatile Tinnitus started, and I am not sure why - I had surgery last year in July, got braces on my front teeth (top and bottom) in Jan. I am also peri-menopausal, so hormones and/or thyroid could be the culprit, or... an issue as yet unfound.

I have been evaluated by a Neuro-Opthamoligist to rule out Benign IntraCranial Hypertension (aka Pseudotumor Cerebri), and it was ruled out in my case. I've had an MRI, MRA, MRV, and Carotid Doppler. The only thing found was on the MRI, which was a narrowing of the left porus asustcus and auditory canal in comparison to the right - which is considered somewhat unusual and could have always been there, or could have developed. A bonus to having the MRI is it showed a normal thyroid (right size, no nodules). However - that doesn't mean the I may not be Hypo/Hyperthyroid (which tinnitus can be a symptom of, as I mentioned). Low blood pressure can also cause Tinnitus (regular type, I believe) which I have on occasion. I sound like a mess don't, I? LOL!

I go to a new Neurologist later this month to have a CT scan of the Temporal bone & Cervical Spine, and whatever else he may want to do.... stay tuned - and keep our fingers crossed that he's even interested in my case, sadly, many doctors are unfamiliar with PT and tend to punt people like us off to another specialist, or tell us to "live with it", which can unnecessary, or even dangerous. I have an excellent Neuro-ENT who is staying the course with me, and has promised to help me find the best people who can help make sure we exhaust all avenues in solving this. One thing I have not done, and my ENT does not advise to (yet anyway), is a Cerebral Angiogram - which carries risks of its own. Given all of my other imaging has come back clear, we're holding off on that to be the very last test, if all else fails to reveal a remedy.

I have been madly researching medical journals from around the world that have addressed this awful condition, as I'm determined to get rid of it. My main concern is to rule out any life-threatening reason for it -- there are several serious thing as I am sure most of you ae aware by now, that can manifest first as Pulsatile Tinnitus, without any other symptoms.

I do have some vertigo that comes and goes since this past December, which has been more or less absent over that last month (thankfully). I do get mild headaches and some left eye pain -- my PT sound is on the left. My PT is technically called 'Subjective Pulsatile Tinnitus' - the subjective type (can not be heard by anyone else or by use of a stethoscope against my head or neck) which is somewhat "good" news. Objective PT can be heard, and is typically easier to find the cause and is usually a blockage in an artery or vein issue in the brain or carotids.

Another area I am researching (relevant to my symptoms) is TMJ, Neck, and Cervical Spine issues -- all of which have been said may cause PT, and I do have TMJ and neck pain. crunching, and crackling noises when I turn my head. Since getting braces on my front teeth in Jan, my bite has been changing of course with each monthly adjustment, and right now it is not a proper bit (malocclusion), I get them off in Sept or Oct, so my Neuro- ENT is sending for a THD/TMJ consult when I get them off - if the new Neurologist doesn't find anything he thinks is causing it.

Yet another area relevant to my symptoms I am researching is Somato-Sensory Tinnitus (of either type - (Constant or Pulsatile). Which means the person can manipulate/change the volume of the tinnitus by certain head and neck movements/positions, and/or by pressing on different areas of the head and/or face -- all of which I can do. ***If you can lower or eliminate the PT by pressing on either side of your NECK (jugular vein area), that is often indicative of a carotid artery or jugular vein issue (which should be examined by having a Carotid Ultrasound).

As the rest of you who probably feel the same... my hopes, wishes, and dreams are that we all wake up one morning and our Tinnitus (of any type) is completely Cured, and we are all in perfect health. Never unwanted sounds ever to return.

Best to everyone, and glad to have found you all...

Deb

 

[Fish]

Hello Deb,

I certainly know how you feel. I am new to this and so far it's hard for me to accept it, but I got support here on this forum. It's both a great source of information and emotional support from other users.

I remember reading a story of some person with pulsatile tinnitus who was found to have a dislocated vein in his head, pushing the ear nerves or so. He underwent the surgery and his tinnitus was actually gone.

Also, one more similar story of pulsatile tinnitus cured:

http://www.washingtonpost.com/wp-dyn/content/article/2009/07/06/AR2009070602919.html

 

[Mike in PA]

Hi Deb, you wrote that back in July 2012. Sorry for the late reply but I just joined this site hopefully your still a member. How's everything going for you? It looks like you've exhausted every resource and test there is to find out what's going on. I too have pulsatile tinnitus (2008). It's in my left ear. And when I press on my cheek bone, move my jaw or head it will either stop or change pitch. The cerebral angiograph is of interest to me because I went to a neuroENT and he presented that test to me but said it was pretty invasive. I decided not to get it.

Problem now is my tinnitus has changed. It used to be just the pulsatile and I was pretty well habituated to it. I rarely noticed it. Now my ears get stuffy/clogged sometimes pain and the tinnitus seems to be constant and in both ears. When it's stuffy it seems to be really loud. It's not too bad when ears are not stuffy. I'm seeing an allergist later this month and my GP gave me a referral for a sleep specialist possibly sleep apnea (I do snore quite load). I thought of the TMJ route as well.

Anyway...good luck with your search for a cause and possible cure.

 

[Karen]

Hi, Mike,
Somehow I missed reading Deb's thread back in July. Her description of searching for a possible cause for her pulsatile tinnitus sounds a lot like mine. I've had pulsatile tinnitus for about 2 1/2 years, since May 2010. It started suddenly, after I took blood pressure medicine, which I had never been on before. Also, my ringing tinnitus, which had been very mild, became a lot louder, sometimes to the point of roaring. I've had pretty much the same tests Deb had, and so far have not been able to find any answers.

My pulsating tinnitus is in my right ear, and is subjective (cannot be heard by others). However, I cannot change the pitch or stop the sound by pressing on my cheekbone or other areas near the ear.

Like you, I began having that stuffy, clogged feeling in my ears. There was no rhyme or reason to it, and it would come and go. Just recently, I haven't had that nearly as much, and my pulsating seems to have calmed down quite a bit. I still don't know why. Maybe, after 2 1/2 years, I'm habituating to it somewhat. It's pretty hard to totally habituate to pulsating tinnitus --- for me, at least.

Do you have crackling in your affected ear when you turn your head? I've been having that for quite some time now, and it hasn't really gotten better. I can't figure out what is causing that; it seems to be worse when I take a shower or wash my hair, so I'm wondering if humidity has something to do with it.

I'll be interested to hear what your allergist has to say, and if he/she will recommend a TMJ specialist for you. Best of luck on your search for a cure; keep us posted!

 

[Lesky]

My deepest sympahties goes out to all of you thats suffering from this horrible type of tinnitus.

I got this in december for the first time for no reason at all, just a loud banging in the right ear with each heartbeat.

Since then its come and gone a few times, thankfully for now its gone.

I am so afraid it will return again and become permanent. I have no issues with blood pressure or anything else.

The only medicin I am taking is Mirtazapin for sleep!

 

[Roger Cloutier]

Hi Deb, thanks for all your insight, have you heard about the ''whoosher''s support group on line, dedicated to those like us who have PT ? I'm sure you have. There is a long list of possible disorders or problems that may be the source for PT. The link is simply whooshers.com.

As for me, I primarily have 2 sounds, a roaring or hum that kind of wanders around my head and does settle somewhere around my right ear, where I also have hearing loss. I developped the ''whooshing'' sound'' about 3 months later and it seems to be the most aggravating one, i.e., the one that wakes me up at nite.
I take melatonin, and ginko at nite , it helps. All in all I feel that stress or anxiety, as well as diet, especially sugar, triggers my symptoms. My whooshing symptoms are at their worst when I lay down to sleep or even sit down. When I stand up and walk around, my symptoms get quieter, and sometimes I don't even notice them. It's weird.

During the first days, I would suppress the symptoms by applying pressure on various parts of my skull, even opening my mouth very wide, and now it seems that turning to the left harshly, quietens the whooshing a little. More recently I have been trying to distract myself, or trying to live with the symptoms by being active, and distracted away from the symptoms. I joined a university stage band and choir, we practise all day on sunday. While I am there and engaged, I am not even aware of my tinnitus. Also, I haven't really noticed the difference playing or not playing music has on my symptoms, except that it helps decrease my anxiety loads. It's no good living in a tinnitus fishbowl.

I do think that this forum is helpful for many reasons. Firstly, being able to share with others is therapeutic. I have been reading about how the human brain is ''plastic'' (figuratively of course), I would recommend ''The Brain That Changes Itself''' by Norman Doidge. Another important name in this regard is Dr. Mike Merzenich. I think that the most important work being done today, is occurring in this new field, or new paradigm.
It's all about hope, I see hope coming from this direction. Finally, just communicating in this forum provides us with hope, something to do, to be able to swing back at tinnitus a little.

hope from Roger in Canada

 

[Karen]

Roger, Thanks for the hopeful comments! Just reading what you wrote makes me feel better.

Your tinnitus sounds a lot like mine. I, too, have hearing loss in my right ear. I have a constant hissing tone, and a pulsating, drumbeat-like tone. When I'm up and active, I don't notice it as much as I used to. However, it's still hard to sleep at night with the pulsating going on. I take a sleep formula called Sweet Slumber, that contains melatonin, valerian, vitamins, etc. I also take magnesium supplements. The combination of those two helps me sleep most of the time, but I still have bouts of insomnia because of the pulsating sound.

I believe that there is some hope in working with the plasticity of the human brain; in fact, I am currently going to a chiropractic neurologist who is working with me to calm the part of my brain that may be causing my pulsating. Will it work? I don't know, but I'm willing to keep trying, and see what happens.

Best wishes to you, and to all of us who are suffering with tinnitus!

 

[robyn]

Hi Deb, thanks for all your insight, have you heard about the ''whoosher''s support group on line, dedicated to those like us who have PT ? I'm sure you have. There is a long list of possible disorders or problems that may be the source for PT. The link is simply whooshers.com.

As for me, I primarily have 2 sounds, a roaring or hum that kind of wanders around my head and does settle somewhere around my right ear, where I also have hearing loss. I developped the ''whooshing'' sound'' about 3 months later and it seems to be the most aggravating one, i.e., the one that wakes me up at nite.
I take melatonin, and ginko at nite , it helps. All in all I feel that stress or anxiety, as well as diet, especially sugar, triggers my symptoms. My whooshing symptoms are at their worst when I lay down to sleep or even sit down. When I stand up and walk around, my symptoms get quieter, and sometimes I don't even notice them. It's weird.

During the first days, I would suppress the symptoms by applying pressure on various parts of my skull, even opening my mouth very wide, and now it seems that turning to the left harshly, quietens the whooshing a little. More recently I have been trying to distract myself, or trying to live with the symptoms by being active, and distracted away from the symptoms. I joined a university stage band and choir, we practise all day on sunday. While I am there and engaged, I am not even aware of my tinnitus. Also, I haven't really noticed the difference playing or not playing music has on my symptoms, except that it helps decrease my anxiety loads. It's no good living in a tinnitus fishbowl.

I do think that this forum is helpful for many reasons. Firstly, being able to share with others is therapeutic. I have been reading about how the human brain is ''plastic'' (figuratively of course), I would recommend ''The Brain That Changes Itself''' by Norman Doidge. Another important name in this regard is Dr. Mike Merzenich. I think that the most important work being done today, is occurring in this new field, or new paradigm.
It's all about hope, I see hope coming from this direction. Finally, just communicating in this forum provides us with hope, something to do, to be able to swing back at tinnitus a little.

hope from Roger in Canada

the whooshing really is awful isnt it? mine starts to really rev up at about 3 pm by 6.oo it is roaring, it drives me nuts I sleep with earphones in I've just upgraded to classical lullubys which are quiet nice. If I push on my corrotid artery it stops but it makes me feel a little sick and my neck is really delicate from being poked at so often sometimes none too gently. I hope one day it will stop, I have given up looking for anwers. I think it is a bit easier now I went down kicking and screaming that I could not, would live with this, But in the end the alternative would leave my partner on his own and my children motherless. I have accepted this horrid noise as a part of life I am trying to accept it as a part of me. in the end you have to try to live with it. I am trying it doesnt come with a garrantee.

 

[Karen]

Hi, Deb,
Your whooshing sounds very much like mine. For me, the ringing and pulsating both begin to get worse in the late afternoon, around 3:00, and reaches its highest pitch by 6:00. I've tried all sorts of things to keep myself calm during that time of day, but it still happens no matter what. My theory is that, since it is somehow vascular in nature, our natural circadian rhythms and blood pressure rev up at that time of day. Somehow it's comforting to know that I'm not the only one who has this problem!

If you want to private-message me, we can discuss further. Best wishes, and stay strong!

 

[NourFakhreddine]

Hello am 19 yrs old female had a pulsatilu tinnitus since 2019 i went to a neurological he gave me Cipralex and neurmocalm and now am better the sound have been reduced slowly but still i can hear the sound of the blood flow whenever i move my head but what i dnt understand is that it came with a sound of crackling and popping muscles my dr said its caused of severe depression as an adoloscante while i have my reasons to be stressed specially when i did an MRI for my head and neck and the results were normal but still am not convinced its been 8 months and the tinnitus is almost cured but the grinding and the pain in my shoulder are not am afraid i have chiari disease if anyone heard abt it before how can i make sure idon't or i do i need an answer please

 

[NourFakhreddine]

Since 2010*

 

[Karen]

Hi, and welcome to Tinnitus Talk!

I read your post with interest, since I have pulsatile tinnitus, too. I've heard of chiari malformation, but did not know much about it, so I googled it. Here is a link to some information I found about this condition:
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Since this is a neurological condition, maybe you could consider going to a neurologist again to be checked and tested. That is what many people recommend on the "Whooshers.com" website (for pulsatile tinnitus sufferers).

Even if you don't have chiari malformation, it might at least ease your mind to be checked out again, just to make sure that all is well. The article I attached suggests CT scan; perhaps you could ask about having one, just to be sure there are no other problems.

I wish you good luck, and am glad that your tinnitus has improved!

Best wishes,
Karen

 

[NourFakhreddine]

Thank you so much karen i read the article and its useful.. I will checkup on another neurologist hoping i won't be diagnosed with ..And hopefully everyone with this condition will be relieved one day.

 

[Karen]

Hi, again, NourFakhreddine,
If you do decide to go to another neurologist, I'd like to hear what he has to say. Will you write a follow-up post to let me know how you're doing?

 

[NourFakhreddine]

Yes ofcourse i will, thx fr caring and i f you need any help with your condition too tell me and ill see if i can help