Pulsatile Tinnitus. Scared.

[Heidi]

My name is heidi I'm from uk.
I've had pulsatile tinnitus since 2008 few months after my first son was born.
I lived with it for a good while and finally saw consultant in 2011. I had a MRI and had hearing tests all came back negative.
I lived with it abit longer then it got worse, more frequent, pressure in my head, waking me up at night, get panic attacks, nightmares anxiety, I'm now off work because of the panic and anxiety of the unknown.
I had another MRI and nothing again but I need answers I can't live normal with this as if you look at other websites it freaks you out and doctors just say live with it, it's nothing. I feel like I'm a time bomb. I feel like no one around me understands I sounds stupid when I try and explain it. I feel like I can't go back to work til I know what's causing it and if there is a cure. I feel like I'm fighting constantly with doctors to help, but they don't seem to know where to look or don't care.

 

[Sherri786]

Hi Heidi, sorry to hear about your t.

 

[James]

Hi Heidi,

Welcome to this forum. Sorry you have this pulsing thing. So do I. You bring up some good points, What is the cause and how in the world can one live like this, good questions. I take a low dose of anti-depressants to help me sleep. Dr. Ancill in here stated Doctors have a good understanding of what's going on; just that nobody has a cure yet.
I understand it's terrible and how your life seems on hold. I hope you can find some help or strength to find a way to live your life, seems like you've done a good job in the past. Lets look forward to a great summer, forget all this T stuff, just go out and have some fun, were still alive and you have a young son.

 

[Mark McDill]

Heidi
Welcome to the site; sorry to hear what you are going through. I have pulsatile T as well (it can get my classic T started up late at night sometimes). I know what you are saying, I've woke up @ 3:00 a.m. with a rush of anxiety (for no apparent reason) and it gets my pulsatile going. The only thing I've found effective is to start taking slow deliberate breaths (to get heart rate back down) and start praying (think on things above). I'm totally unaware of you situation or circumstances, so I'm sorry if what I'm saying is strictly anecdotal.

Prayers for you...

Mark

 

[Karen]

Hi, @Heidi, and welcome!

I'm so sorry you're having problems with pulsatile tinnitus. I know what you're going through right now, because I have both pulsatile tinnitus and hissing/ringing tinnitus.

You mentioned that your pulsatile tinnitus started after childbirth. I've heard that is not uncommon, and it has something to do with the rapid changes your body went through during and after the birth. There was a great deal of increased blood flow in your body when you were pregnant, and after you gave birth, your body again went through a lot of hormonal and blood flow changes as it returned to normal. My daughter also had tinnitus (not pulsatile) both during and shortly after her pregnancy, but hers finally went away on its own.

I know you've been to more than one doctor and have had an MRI, with negative results. Has your doctor ever thought to order a CT scan? I have heard that, if there is a physical reason for the pulsatile tinnitus, a CT scan with contrast dye may show some things that are not visible on an MRI. Also, have you experienced headaches or other symptoms along with the pulsatile tinnitus? There is a condition called benign intracranial hypertension that causes pulsatile tinnitus, plus bad headaches. It is caused by too much fluid around the brain, and some people with this condition find relief from a lumbar puncture. This is something you could ask your doctor about.

I noticed that you are in the UK. Have you heard of a hospital there called Addenbrooke's? I've heard that some pulsatile tinnitus sufferers in the UK have gotten a diagnosis there. Worth a try, if you are near that hospital.

Some of us never find a cause for our pulsating, and have elected to "live with it". I am one of those people, at least for now. I've had a lot of tests, and nothing was found, so I have taken a break from doctors for right now.

You might want to check out "Whooshers.com". There, you'll find a lot of information about pulsatile tinnitus and stories of "cured whooshers". There is also a Facebook group for whooshers that you might want to check out.

I wish you the best; you've come to the right place, with people who really do understand what you're going through.

Best wishes and hugs,
Karen

 

[AliHT]

Hi Heidi!


I need to get this through to you. We sometimes find ourselves in a predicament that can I either define our place of happiness for us or that we can define a place for it in our happiness. Will it be easy? Hell no. The point Heidi is that you are hurt now. Trust me, I have had tinnitus now for 2 months(plus hyperacusis) and I have had to rethink new strategies, new meanings, new goals and outcomes. "Why go on? It will never be the same!" I understand now what I didn't then, its not meant to be the same. I am not meant to be the same. I am meant to be different. In a sense I am also meant to be happy. The greatest realization one can make is that these two adjectives can and will co-exist.


With all that said never take the answer that you are "incurable" to heart. Keep consulting doctors, keep searching for alleviation for your illness and most importantly search for a way to find yourself in a better place. Your mind is the most important part about you.


Plenty of people are here to support you. Want to chat with someone? Just give me a nudge and we can talk privately(this goes out for anyone finding themselves in a dark place).

It will hurt for some while, no way getting around that. However, the understanding that one can rise above ones own illness is a comforting thought that needs to accompany each and every one of us through every step of our journey.


Keep strong Heidi!

 

[Ser]

Hold on Heidi, try to leave the house, I feel much better when I go out and think less of these stuff.

 

[daedalus]

I don't like to advertise for clinics or give false hopes but it could be a job for the brai2n clinic in Belgium.

http://www.brai2n.com/

You could email them and see how they react.

 

[Lous22]

Heidi, did you ever figure out the cause? My PT started a few months after my daughter was born and I'm dealing with the same anxieties you were when you wrote this post. How are you?