Essential thrombocytosis and heartbeat in ear - MPN Voice

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Essential thrombocytosis and heartbeat in ear

Irishgal12 profile image
13 Replies

Hi I have been hearing my heartbeat in one ear for a few months happens when I stand up from laying or change position in bed. I have googled and worried it's a blood flow problem and now am linking it to et! I have am appointment with ENT in 3 week.

Does anyone have this

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Irishgal12 profile image
Irishgal12
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13 Replies
Applesnpears profile image
Applesnpears

Hi, Pulsatile tinnitus (varies with your heartbeat and typically a whoosing noise) can be a symptom of ET but there are other causes where ET might be an aggravating factor.

Seeing an ENT specialist makes sense but remember to mention your ET diagnosis and explain what it is. Perhaps take one of the MPN leaflets with you. ENT consultants won't see that many patients with an MPN

Try not to worry and drink plenty of water.

Irishgal12 profile image
Irishgal12 in reply toApplesnpears

Thank u good idea about leaflet

I just keep thinking I have a clot or blood not flowing right x

Otterfield profile image
Otterfield

I have had this on and off for many years. It's more frequent when I've had a wax build up. To be honest, I've never worried about it.

Irishgal12 profile image
Irishgal12 in reply toOtterfield

Really does yours happen like me when laying to standing

Otterfield profile image
Otterfield in reply toIrishgal12

When I'm lying in bed. I can usually stop it by turning onto my other side.

Irishgal12 profile image
Irishgal12 in reply toOtterfield

Yes am just panicking

Iyana271 profile image
Iyana271

One thing I want to mention here, Don't trust online information, I said never trust on online information. It will only make you worry more. Rather than surfing online for such information consult with the specialist. Like you said you've already made an appointment.

You can also visit the nearest clinics for a general checkup if you're more worried. Maybe it, not something that you're thinking so be positive.

Best wishes!

MaggieSylvie profile image
MaggieSylvie

Hi Irishgal, I told you before that it was just that that sent me to the GP and that finally led to my diagnosis. It was, so far as I know, my first symptom. If you're taking aspirin it's unlikely to be a clot. Since it has persisted, my haematologist said I should see my GP about it! I haven't got around to it, and it has calmed down a bit lately, but when I get anxious I gets louder. I don't just have ET. I have a myelodisplastic syndrome as well, which probably means my heart is having to work harder to get the blood pumped around my body. I'm not really worried but will go to GP when I come back from Morocco at the beginning of April. It is most noisy when lying down but can occur at any time when there is no other noise around. At its worst, it sounded like a Russian army marching through snow. It was very loud and would keep me awake at night but if I lie on the other ear it quietens. I don't get to see my haematologist until May 7th, and I don't feel as if I have any ENT disorders to speak of. The funny thing is that it has a regular pulse but when I have palpitations it still sounds regular.

Keep well - and away from the virus!

Irishgal12 profile image
Irishgal12 in reply toMaggieSylvie

Thank u. I googled and got worried

kiwitraveller profile image
kiwitraveller

Hi I have been getting this every now and again usually early morning and it keeps me awake. Have mentioned it to consultant at Guys and they do not seem to be concerned. Usually I can turn over and not block the offending ear. It was really bad before I was diagnosed but is a lot less now and seems to be more when I am travelling

hunter5582 profile image
hunter5582

I have occasionally experienced the same thing. It has always seemed related to ear conditions rather than the MPN per se. I almost always have some level of tinnitus. Elevations in the viscosity of the blood and blood pressure can contribute to tinnitus, but other aural conditions can cause it too. Likely a combination of things for me, resulting in tinnitus that at times is rather loud and at times almost silent.

FYI - I suggest Googling wisely rather than not Googling at all. There is some scary nonsense out there, but also really good reliable information. Two things are important to do. 1. Rely on patent resources you can trust (e.g. Voices of MPN, Mayo Clinic, Johns Hopkins, etc.). 2. Rely on professional publications and peer-reviewed research. It is really important to build a solid foundation of basic physiology, medical terminology, and related topics. When you look at information about pathologies like MPNs and related symptoms, you have to be able to put what you are reading in context. Just because something can happen, does not mean that it will. MPNs and the related symptoms are still an area where understanding is changing, growing and improving. You do need to subject the information that you find with judicious and objective evaluation. Keep it in context and do not overreact.

Sounds like you have a good plan to go see the Otolaryngologist. Applesnpears is right about not assuming this doc will be familiar with MPNs. Most are not. A chat with you MPN-doc would also be in order.

Wishing you some blessed silence and no more worry.

Irishgal12 profile image
Irishgal12 in reply tohunter5582

Thank you

Doggy1903 profile image
Doggy1903

Hello yes I have ET and also have had a sound in one ear for quite a lot of years. It seems to come and go but I have got used to it. It can be rather disturbing and wish it would be lovely and quiet at times. Hope you are ok and get some good care form ENT.

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