Sound and Sensation of Water Running Though a Pipe When Going from Lying Down to Standing Up

[makeyourownluck]

Hi Guys,

I've had pulsatile tinnitus for about 4 months and would like to see if anyone shares similar symptoms and has received a diagnosis. I am in the UK and the waiting lists are absolutely terrible at the moment.

When I wake up in the morning I have minimal pulsatile tinnitus until I stand/sit up and get the sensation of water draining through a pipe. It does not start straight away maybe after 10-20 seconds and lasts for about 30-60 seconds. After this noise/sensation I am left with a feeling of fullness that increases as the day goes on. I also have a 'whoosh whoosh' throughout the day which is made worse by bending over, and any physical activity where I have to strain such as picking up my daughter etc.

This sensation only affects my right ear. I had a period of having very low blood pressure and fainting episodes, and the pulsatile tinnitus started during this period after I rushed out of bed to get to a doctor's appointment about my regular tinnitus (the irony!).

I have a borderline overactive thyroid but my doctor isn't keen to treat it just yet.

 

[makeyourownluck]

Just bumping this thread. Any advice anyone can offer? Can't afford to go private, the NHS waiting lists are a joke, and I'm worried something serious is going on.

Gonna tag two people who seem knowledgeable:
@tiniturtle
@Greg Sacramento

 

[Clerkp]

Hi, did you ever get an answer on this?

I am experiencing this and have been experiencing this for many years. It has never bothered me but now I am wondering what might be going on.

 

[makeyourownluck]

@Clerkp, still not got any answers. When I do I'll let you know.

 

[Clerkp]

@Clerkp, still not got any answers. When I do I'll let you know.

My gut tells me this isn't pulsatile tinnitus. I believe I am experiencing ear pressure issues.

 

[makeyourownluck]

Yeah it's definitely a weird one. Sometimes it's like I'm hearing the fluid in my inner ear moving, but I don't even know if that is possible...

The thing that makes me think it's pulsatile tinnitus is that the whooshing throughout the day being in time with my heartbeat.

 

[Clerkp]

Yeah it's definitely a weird one. Sometimes it's like I'm hearing the fluid in my inner ear moving, but I don't even know if that is possible...

The thing that makes me think it's pulsatile tinnitus is that the whooshing throughout the day being in time with my heartbeat.

It's possible you have 2 different things going on. I am experiencing the first part but I've been told my ears are clear. I do not experience the second part. They may or may not be related.

Is your whoosh present when sitting still or only when active?

 

[makeyourownluck]

The whoosh is intermittent but at times it can be heard when sitting still, particularly in the evening. The pulsing drives me crazy though because unlike the normal tinnitus, it comes with a sensation.

I would say the water draining through a pipe is the worst of it, even though it happens the least. When I get up too fast the noise makes me feel physically sick. If the pressure would just go away I feel I would be able to cope a bit better.

What's your theory on the ear pressure? What do you think is causing the sound?

Ah sorry forgot to tag you in my reply @Clerkp.

 

[Clerkp]

The whoosh is intermittent but at times it can be heard when sitting still, particularly in the evening. The pulsing drives me crazy though because unlike the normal tinnitus, it comes with a sensation.

I would say the water draining through a pipe is the worst of it, even though it happens the least. When I get up too fast the noise makes me feel physically sick. If the pressure would just go away I feel I would be able to cope a bit better.

What's your theory on the ear pressure? What do you think is causing the sound?

Ah sorry forgot to tag you in my reply @Clerkp.

Sorry to hear of your symptoms. I'm guessing ETD. My right ear has always popped more than my left ear so maybe this is something that is just getting a little worse. Enough to create the light clicks and pops. It's really annoying because there is no trigger.

 

[UKBloke]

Hi Guys,

I've had pulsatile tinnitus for about 4 months and would like to see if anyone shares similar symptoms and has received a diagnosis. I am in the UK and the waiting lists are absolutely terrible at the moment.

When I wake up in the morning I have minimal pulsatile tinnitus until I stand/sit up and get the sensation of water draining through a pipe. It does not start straight away maybe after 10-20 seconds and lasts for about 30-60 seconds. After this noise/sensation I am left with a feeling of fullness that increases as the day goes on. I also have a 'whoosh whoosh' throughout the day which is made worse by bending over, and any physical activity where I have to strain such as picking up my daughter etc.

This sensation only affects my right ear. I had a period of having very low blood pressure and fainting episodes, and the pulsatile tinnitus started during this period after I rushed out of bed to get to a doctor's appointment about my regular tinnitus (the irony!).

I have a borderline overactive thyroid but my doctor isn't keen to treat it just yet.

The sensation of water draining through a pipe is something I had about 3 years ago during allergy season when lying down one night. It literally felt as though a tap was pouring through my ear, which then very quickly bunged up. GP reckoned it was ETD and although he prescribed a steroid nasal spray I decided not to use it and sit things out instead. Ear eventually normalised.

Earlier this year I also experienced the whooshing sound of pulsatile tinnitus. Again, it was something I sat out over a number of weeks after which it did fortunately calm down and go away. By all means try and get a diagnosis if you're overly concerned but I have a theory that, "allergised ETD like", ears that bung up and whatnot may sometimes conduct venous sounds that can be perceived as pulsatile tinnitus.

If you're going to try and get a diagnosis via the NHS it's possible in the meantime to try some self-help meds like anti-histamines and/or a nasal spray. If going for the nasal spray the method of administration when trying to get the stuff onto the Eustachian tubes is important. Good article about that here.

 

[makeyourownluck]

@Clerkp, I do get TTTS in my left ear that has a similar sound but it reacts to noise, not so much the loudness but the frequency. My daughter's voice is a particularly trigger but not much I can do about that maybe that is what you are dealing with.

After all the threads about ETD I'm trying not to get my hopes up that this is something curable. I'm a prepare for the worst kind of gal.

@UKBloke, thanks for your reply. So glad to hear things resolved for you and really appreciate the advice. I think the worst thing about this condition, aside for the constant f***ing noise, is my fear of medicine and it's potential ototoxicity. I will try the antihistamines though, time to suck it up and try do something to help myself.

 

[tiniturtle]

This is classic pulsatile tinnitus. Most likely what you are hearing is turbulent flow through your blood vessels close to your ear. This is exactly what I have experienced, and still experience to some degree after it's been repaired. You should get an MRI/MRA and see a neuro interventional radiologist for a consult. They are typically part of neurosurgery/stroke teams at hospitals.

Be wary of any advice you are offered on this forum. No one here is qualified to give you advice or diagnosis. I can offer you some direction based on my extensive experience with this, but you need to see a qualified doctor. You aren't going to find any answers here.

 

[makeyourownluck]

This is classic pulsatile tinnitus. Most likely what you are hearing is turbulent flow through your blood vessels close to your ear. This is exactly what I have experienced, and still experience to some degree after it's been repaired. You should get an MRI/MRA and see a neuro interventional radiologist for a consult. They are typically part of neurosurgery/stroke teams at hospitals.

Be wary of any advice you are offered on this forum. No one here is qualified to give you advice or diagnosis. I can offer you some direction based on my extensive experience with this, but you need to see a qualified doctor. You aren't going to find any answers here.

Thank you for your response. Don't get me wrong, when compared to other posts I've read, I doubt my pulsatile tinnitus would be considered loud, in-fact most of the time my regular tinnitus will mask it. It's the sensation I just can't stand and I now avoid anything that increases my heart rate because of it. Salt seems to be a big trigger also.

I have read many of your posts; however, navigating the NHS is extremely frustrating (you only get put on the referral pathway that the doctor thinks appropriate - for me he says ENT). Do you have any advice on what I can say to change his opinion?

Thanks.

 

[tiniturtle]

Thank you for your response. Don't get me wrong, when compared to other posts I've read, I doubt my pulsatile tinnitus would be considered loud, in-fact most of the time my regular tinnitus will mask it. It's the sensation I just can't stand and I now avoid anything that increases my heart rate because of it. Salt seems to be a big trigger also.

I have read many of your posts; however, navigating the NHS is extremely frustrating (you only get put on the referral pathway that the doctor thinks appropriate - for me he says ENT). Do you have any advice on what I can say to change his opinion?

Thanks.

This is written and maintained by the doctors at NYU Langone, who are a foremost leader in the treatment of these types of issues:

http://neuroangio.org/patient-information/diagnosis-and-treatment-of-pulsatile-tinnitus/

 

[makeyourownluck]

This is written and maintained by the doctors at NYU Langone, who are a foremost leader in the treatment of these types of issues:

Thank you.

 

[tiniturtle]

Thank you.

They are also the group that performed my surgeries.

 

[makeyourownluck]

They are also the group that performed my surgeries.

Hello again,

I recently had a consult with an ENT who told me my pulsatile tinnitus was just caused by hearing loss. He said pulsatile tinnitus is usually just as benign as regular tinnitus, and the condition is extremely common. As you can imagine, I am very frustrated with this 'diagnosis'. I did try to mention the most recent research & the website you linked - he looked at me like I was crazy and told me I am focusing on the noise too much.

I guess I will now have to go fight my GP for a neuro-interventional radiologist referral.

I have read your story and sharing symptoms with people like you who have had life threatening conditions makes my anxiety go through the roof. But I don't feel like I have many options.

@Steph1710, could you offer any advice on how you managed to get the NHS to perform the appropriate scans? Did you go through an ENT or a neuro-interventional radiologist? I know you were finally diagnosed and will be treated Adenbrooks, but I don't think people in Scotland can be referred through the NHS to hospitals down South. Did you just complain until you got somewhere?

 

[tiniturtle]

Hello again,

I recently had a consult with an ENT who told me my pulsatile tinnitus was just caused by hearing loss. He said pulsatile tinnitus is usually just as benign as regular tinnitus, and the condition is extremely common. As you can imagine, I am very frustrated with this 'diagnosis'. I did try to mention the most recent research & the website you linked - he looked at me like I was crazy and told me I am focusing on the noise too much.

I guess I will now have to go fight my GP for a neuro-interventional radiologist referral.

I have read your story and sharing symptoms with people like you who have had life threatening conditions makes my anxiety go through the roof. But I don't feel like I have many options.

@Steph1710, could you offer any advice on how you managed to get the NHS to perform the appropriate scans? Did you go through an ENT or a neuro-interventional radiologist? I know you were finally diagnosed and will be treated Adenbrooks, but I don't think people in Scotland can be referred through the NHS to hospitals down South. Did you just complain until you got somewhere?

Yeah, this is just irresponsible. Diagnosis of exclusion can't be done until you do the actual excluding by diagnostics. Clinical guesswork isn't sufficient. Don't get too anxious about this, but keep pressing. Sometimes I think it's limited to this country, but I think medicine in general is no longer proactive. Instead of "let's prevent a stroke", it's "let's wait and see if you have a stroke and then we will treat it". Many cases of pulsatile tinnitus are benign, but a lot also are indicate of another problem. It has to be investigated. An ENT doesn't have the proper training or education to know these things.

 

[corvid100]

Yeah, this is just irresponsible. Diagnosis of exclusion can't be done until you do the actual excluding by diagnostics. Clinical guesswork isn't sufficient. Don't get too anxious about this, but keep pressing. Sometimes I think it's limited to this country, but I think medicine in general is no longer proactive. Instead of "let's prevent a stroke", it's "let's wait and see if you have a stroke and then we will treat it". Many cases of pulsatile tinnitus are benign, but a lot also are indicate of another problem. It has to be investigated. An ENT doesn't have the proper training or education to know these things.

Thank you. I really appreciate your input. It's very helpful for the rest of us navigating the healthcare system.

My GP was going to be happy just ordering a regular MRI, even thought the ENT wants an MRA. Around and around we go and finally got the ENT to order the MRA and now just waiting for Medicare to approve it. One has to be super proactive in their own care because so many doctors are so clueless about pulsatile tinnitus.

 

[makeyourownluck]

Yeah, this is just irresponsible. Diagnosis of exclusion can't be done until you do the actual excluding by diagnostics. Clinical guesswork isn't sufficient. Don't get too anxious about this, but keep pressing. Sometimes I think it's limited to this country, but I think medicine in general is no longer proactive. Instead of "let's prevent a stroke", it's "let's wait and see if you have a stroke and then we will treat it". Many cases of pulsatile tinnitus are benign, but a lot also are indicate of another problem. It has to be investigated. An ENT doesn't have the proper training or education to know these things.

I think I will just have to complain until I get somewhere. I really can't understand why the medical field doesn't focus on prevention. In the long run it would save money. It's very frustrating.

 

[tiniturtle]

Thank you. I really appreciate your input. It's very helpful for the rest of us navigating the healthcare system.

My GP was going to be happy just ordering a regular MRI, even thought the ENT wants an MRA. Around and around we go and finally got the ENT to order the MRA and now just waiting for Medicare to approve it. One has to be super proactive in their own care because so many doctors are so clueless about pulsatile tinnitus.

Why not both MRI and MRA at the same time? For my follow-ups I typically do an MRI, MRA, and MRV.

 

[makeyourownluck]

Why not both MRI and MRA at the same time? For my follow-ups I typically do an MRI, MRA, and MRV.

This would be great, but I don't think my GP can order these scans, I have to have a referral from a specialist.

 

[Russell Grimes]

Why not both MRI and MRA at the same time? For my follow-ups I typically do an MRI, MRA, and MRV.

I have an MRI in two weeks. I hear the blood rushing past my right ear with high intensity and pitch when I move - standing from sitting, sitting from standing, rolling over in bed. I also hear the pulse-synchronous, high-pitched sound throughout the day but the volume is fairly constant unless there is a change in position of cardiac output. I also hear squealing sounds when I turn my head in certain positions. I think there is a good chance I have a fistula like you had. My cervical spine has also been bothering me. It could be a spinal fistula.

 

[Russell Grimes]

This would be great, but I don't think my GP can order these scans, I have to have a referral from a specialist.

How are you doing now?

 

[Russell Grimes]

Hi Guys,

I've had pulsatile tinnitus for about 4 months and would like to see if anyone shares similar symptoms and has received a diagnosis. I am in the UK and the waiting lists are absolutely terrible at the moment.

When I wake up in the morning I have minimal pulsatile tinnitus until I stand/sit up and get the sensation of water draining through a pipe. It does not start straight away maybe after 10-20 seconds and lasts for about 30-60 seconds. After this noise/sensation I am left with a feeling of fullness that increases as the day goes on. I also have a 'whoosh whoosh' throughout the day which is made worse by bending over, and any physical activity where I have to strain such as picking up my daughter etc.

This sensation only affects my right ear. I had a period of having very low blood pressure and fainting episodes, and the pulsatile tinnitus started during this period after I rushed out of bed to get to a doctor's appointment about my regular tinnitus (the irony!).

I have a borderline overactive thyroid but my doctor isn't keen to treat it just yet.

What happens to the sound if you jump up and down a few times?

 

[makeyourownluck]

What happens to the sound if you jump up and down a few times?

I'm doing better mentally but the noise/sensation has not improved. The sound increases with any physical exertion.

My knees are terrible right now, so I can't jump up and down to check. I'd imagine the sound would increase.

 

[LilCC]

I'm doing better mentally but the noise/sensation has not improved. The sound increases with any physical exertion.

My knees are terrible right now, so I can't jump up and down to check. I'd imagine the sound would increase.

So is pulsatile tinnitus a sign of a possible stroke? I've had this for some time now, but I'm scared to get an MRI because I already have severe hyperacusis and tinnitus, I'm afraid to make it worse.

 

[Russell Grimes]

I'm doing better mentally but the noise/sensation has not improved. The sound increases with any physical exertion.

My knees are terrible right now, so I can't jump up and down to check. I'd imagine the sound would increase.

I am sorry to hear your condition has not improved but am glad you are coping okay.

My pulsatile tinnitus increases with movement or exertion also. When I bounce up and down it sounds like a bed spring keeping in time with every bounce. When I stop bouncing it is in time with my pulse. It is bizarre and disconcerting.

I hope you are trying to get some testing done to find out what may be causing your pulsatile tinnitus.

When I wake up, my pulsatile tinnitus is often extremely loud and does not quiet until I change positions. I am not sure if you notice any difference after awakening.

 

[makeyourownluck]

So is pulsatile tinnitus a sign of a possible stroke? I've had this for some time now, but I'm scared to get an MRI because I already have severe hyperacusis and tinnitus, I'm afraid to make it worse.

It can be, but it is rare. I feel the same about getting an MRI. I only have mild sensitivity to noise but I don't want it getting any worse.

 

[makeyourownluck]

I hope you are trying to get some testing done to find out what may be causing your pulsatile tinnitus.

When I wake up, my pulsatile tinnitus is often extremely loud and does not quiet until I change positions. I am not sure if you notice any difference after awakening.

I don't really know how to get anyone to take pulsatile tinnitus seriously so have kind of given up. Conserving my energy.

It's interesting because in the morning my pulsatile tinnitus is almost non existent. As soon as I stand up it's back, along with ear fullness. I think it's a dilating vein putting pressure on something it shouldn't be, who knows.