[Charlie_J]

Hi, everyone. In this thread, I will post my experiences as I go through the processes again of trying to get the doctors to address my pulsatile tinnitus.

Background

The noise started quietly but continuously in 2006, with no discernible cause. It got louder until it was severely disrupting. I dreamed of sirens and fire engines for months. All I wanted was to stick a screwdriver into my ear to make it stop. Listening to classical music was gone forever because I couldn't listen to shades of volume. I had to give up studying , had to take time off of work and was involved not only with my local ENT department, but also my work's occupational health team.

I had many hearing tests, a standard MRI scan, have tried a masking device and had a series of appointments with a psychologist, who had me try EFT and who spectacularly failed to notice that I was bipolar. Eventually, my then work's occupational health department came to the tentative conclusion that I had some low frequency hearing loss.

My depression became too bad to continue swimming against the tide, , especially considering that I was battling gallstones at the time, for which I finally had surgery after a number of emergency admissions due to the pain.

I no longer have a gall bladder.

During my last "high" my main employment was work in a call centre for which I could and did use my good ear. I did not return to study.

Now

That's all that out of the way. I noticed an article in something that might loosely be termed a "newspaper" some time ago about a man who could "hear his eyeballs move" and also hear his heartbeat. He had been cured!

I looked him up and found out that he had something called Superior Canal Dehisence Syndrome. I looked into it, and eventually came upon this website, full of similar success stories and many other causes of the terrible noise I've been suffering with.

By this time, I can no longer watch television without subtitles, and have developed an ectopic heartbeat which I am sure relates to the stress of hearing every single heart beat. See if you can watch this smilie for a full minute and notice each beat...

If I press on my jugular vein, I can make the noise stop for a few seconds if it's important. For instance, if I can't hear what someone else is saying. I have experienced many tension headaches due to unconsciously favouring that side with the tilt of my head and a myriad other things I'm not going to list.

Finally (for this post, anyway), this is the closest to the sound I hear 24/7.

I will from this point on post about what happens next and what I experience as I try to get to the bottom of it. I do foresee some difficulty...

[Charlie_J]

A month or two after discovering the newspaper article mentioned above, I approached my doctor about it with a view to having the previous MRI results looked at and explained to me by the ENT department or my GP himself.

He brought up some of the websites I had been researching on his computer and we read through them together. He said it was compelling and said he would ask about the MRI as it wasn't on his system and would refer me to the ENT.

Today, I have received a letter which means I can call to get an appointment with them.

I have in the meantime researched thoroughly and come up with a list of conditions that can cause pulsatile tinnitus, for which there has also been an actual cure. These are:

Absence of Vertebral Artery
Aneurysm of Dural Venous Sinuses
Arnold Chiari Malformation and Pseudotumor Cerebri
Carotid Artery Dissection/Stenosis
Carotid-Cavernous Sinus Fistula
Chronic Subclavian Artery Occlusion
Coarctation of Aorta/Aortic Coarctation
Dural Arteriovenous Fistula Resulting from a Clot in the Sigmoid Sinus
Essential Thrombocythemia (ET)
Glomus Tympanicum
High Jugular Bulb
Iatrogenic Pneumocephalus
Idiopathic Intracranial Hypertension
Lyme Disease
Metastatic Carcinoid Tumor with External Compression of a Vertebral Artery
Severe Ipsilateral Carotid Stensosis
Superior Canal Dehiscence Syndrome/Temporal Bone Defect

While they sound scary, some of the above are ridiculously easy to test for (such as testing blood pressure equality), some are expensive to test. Some would require an operation, and some would be cured simply by additional medication.

It's my intention to revisit this particular post and note each time one of them is tested for, as much for my own benefit as for others who might be suffering and looking for guidance.

~~~~~~~~~~~~

In other news, the last time I spoke with my CPN, I brought this up with him since I want to be able to rely on his support and help in formulating a plan of defence and attack in order for my health in this matter to be properly addressed. Straight away, he seemingly joined the ranks of the enemy *sighs*

He mentioned that dreaded term, habituation, and said I should join the Expert Patients Program - an end user support group for people with incurable diseases/conditions.

I'll need to keep explaining it to him and bringing it up, because I need him to be my person I can rely on to remind me where I am and what I'm doing when they talk me around in circles and count on me getting upset so they can refer me to mental health services.

Habituation is a term they like to throw around a lot, and if you have tinnitus yourself, I'm sure just the thought of the word is enough to make you explode. I'm going forward trying to keep in mind these two simple ideas:

I have the same right to health care as anyone else, and I should be able to expect that the cause of this debilitating condition be sought before being told to "habituate", especially when there are previous cases detailing diagnosis and cure.

When other patients present to the NHS and are given cosmetic surgery, it is because their quality of life is extremely adversely affected. Hearing your own pounding heartbeat 24/7 leads to the same decrease in quality of life. Why should I be treated differently? In fact, any tinnitus at all, pulsatile or not, can lead to terrible tragedy.

While I am doing quite all right at present, and not threatening by any means, considering that my suicide risk is made higher by being bipolar, and also by having suffered the suicide of my father and only sibling, it must be irresponsible to refuse to help by testing for these things.

Anyway, that's all for now. GP appointment tomorrow, and CPN on friday. Hopefully, I'll have something to update with.

Look after yourselves, ppl!

[Perna]

Fascinating. I have had tinnitus since the late 1990's from my bout with Meniere's Syndrome. I like the Mayo Clinic's general information:

http://www.mayoclinic.com/health/tin...SECTION=causes

Good luck on being able to help lessen yours, Charlie!

[Charlie_J]

Thank you for the helpful link, Perna. There is a lot of information there that I will look into and likely add to my thread. I forgot to say I had taken medication for Meniere's Disease that didn't help. I'll add that too.

There's a big thing going on in my life at the moment, which might mean I don't get to bring this up with my GP as I'd like, or I might only have time to say I've had a referral letter.

I've called to make the appointment. Due to my circumstances at present, I can only attend on a Friday when my mother is off work. So... the next available appointment on a Friday for the ENT's Hearing and Balance clinic is Friday 3rd February. This might be a quietish thread until then. We'll see.

Since I am under a lot of stress, it's probably a good time to say that stress only affects my tinnitus in the sense that I notice it more. As I'm sat here now, it's been a lot louder than this before and quite recently, when I was coming down with a cold. I thought that was worth noting.

[Charlie_J]

I thought I ought to update this thread. I meant to contribute to it each time something happened in relation to this, but I've been so poorly over the last year it's been impossible.

Ok, so I saw an ENT doctor at some point early in the year, and dutifully went along to see him with my list of possible causes which took so long to research. He flipped through them so quickly I can't be sure he even read the name of them. He definitely didn't read the details.

He then said, and I'll get as close to his actual words as I can here: "If I do my part, and send you for the applicable tests, are you willing to do your part when the results come back, and not show up with any more lists of conditions?"

I came away from the appointment very down, really. But I reasoned that I can have the tests, and deal with him again when I go back. When I saw my GP, he read that the ENT doctor had been so impressed with my list that he'd scanned it into the online library at the hospital... but that's not what I made the list for.

I went on and had a CT scan, hearing tests, an MRI (this time without contrast), and a Vestibular function test.

My appointment to see him again is on the 15th of this month. I don't know if I will be able to take my CPN as they're currently restructuring and I haven't been allocated a new one yet. There's no telling I'll even know who I've been assigned to when my appointment comes along.

In the meantime, that ectopic heartbeat has become more disrupting. Instead of happening 3 or 4 times a month, it's now 3 or 4 times a day, and increasing. The attacks last longer too, up to ten seconds at a time. I also at times have a resting heart rate of anything from 110bpm up to 130bpm. A high dose of Venlafaxine can't be ruled out as the cause.

Doctors and nurses have had a lot of trouble over the past few months in obtaining my blood pressure for some reason. Last time, it took experience nurses well over half an hour. Ironically, the nurses "couldn't hear" my heart beat.

I think I need to write myself a list and reference to take with me to the appointment so that I don't get pushed around.

Anyway, that's where I am with this.

[Charlie_J]

UPDATE:

I will be cancelling my appointment with the ENT and moving it to a later date. My CPN has been "restructured" away from me and I'm currently waiting for another one.

I need an advocate with me, and there's no reason why I should make do. I'll just delay the appointment.

[Perna]

Good job taking care of yourself! You don't have a good, knowledgeable friend or relative you can take along to back you up? My stepsister nearly became a nurse (my niece did) but the studying did her in. However she was so close that it was very helpful when she was dealing with the doctors in my stepmother's behalf, my stepmother being senile.

Have you figured out the heartbeat/Venlafaxine suspicion problem? My asthma meds raise my blood pressure numbers and I have a problem with getting my blood pressure taken that my doctor and I have to do work arounds for.

I had exact symptoms for Meniere's but the ENT said it wasn't "real" Meniere's. I'm sorry, falling over and throwing up randomly, nystagmus, it was all enough for me, make it stop! He didn't, recommended I take seasick pills the rest of my life, "in case".

Keep on them, Charlie, until you get answers you like.

sounds like a really nasty thing to have.

sorry that you had to go through it

[Charlie_J]

Thank you Perna and ShatteredSanity...

The heartrate/Venlafaxine thing... well, despite my misgivings, the doctor I saw the other day about this very thing, took my heart rate (which when I got to see her was a normal 78), took my blood pressure, which was normal (especially considering I'm an overweight smoker), listened to my heart and lungs, which both sound absolutely normal.

She mentioned ectopic beats again to account for the jumping about of my heart.

At this point I have to concede that there's a good likelihood that stress from the pulsatile tinnitus is making me hyperaware of my heartbeat to the point I'm having mini panic attacks, thereby having the funny skippy heartbeats. The doctor said this could well be the case.

That's a relief in one way, because then it means there's nothing wrong with my heart, and my fear that I might drop down dead of a heart attack without being able to "prepare" things first is slowly fading away.

But then, it leads back to the pulse in my ear, and the fact that they're likely to be sending me away again. Maybe I'll just sit in the little room until they have security remove me.

Anyway, I've cancelled the appointment for now until I know who my new CPN is. They said if I took too long to make another one I'd be discharged, but I think my doctor could refer me again anyway, and they should still have all the results there on my file.

That's all for now!

[Perna]

Originally Posted by Charlie_J

Maybe I'll just sit in the little room until they have security remove me.

LOL

There is something to be said for "concentrating" on a problem, and how that problem gets to be/mean "more" than it actually does. I know when I "listen to" my tinnitus I hear it loud and clear but "normally" I don't notice it unless it gets in the way (I'm trying to hear/listen for something else or am in a loud/crowded room with lousy acoustics, etc.). Writing about it now, it's loud and clear