I was diagnosed almost 2 years ago with ET with Jak2 Mutation. I am still on 500 mg Hydroxyurea, the minimal dose once a day! I saw an ENT yesterday. The doctor who never heard of my ET, didn't see any info about Hydroxyurea as a possible reason. Has anyone else dealt with Pulsative Tinnitis? I did find this today and more info as well. Thanks for any input available!!!!
While there isn't a large body of research directly linking hydroxyurea to pulsatile tinnitus, some anecdotal evidence suggests it could potentially contribute to tinnitus symptoms in certain individuals, as it can affect blood flow dynamics due to its mechanism of action on red blood cells
Written by
Kareneliz
To view profiles and participate in discussions please or .
I have terrible tinnitus all the time. Only pulsative when I sleep on my right side. It’s with me 24/7. Much worse since I started hydroxy. I also have ET on 500 five days a week. Needless to say I don’t sleep on my right side. My MPN specialist at Stanford just said go to an ENT. Never did. Sorry I’m not much help. I also was diagnosed about two years ago. I’m 79.
Thank you for the reply!!! Do you have it in one ear or both? I have it in one. I did go to a ENT yesterday and they seemed to concentrate more on my sinuses although i am having a few tests when or if they ever call me! I still think somehow its medicine related! I'll let you know if i find anything out! Thanks again for answering me.
I had never heard of pulsative tinnitis, but I see the symptoms are described as a rhythmic sound including whooshing, throbbing, or thumping in one or both ears, often in sync with heartbeats.
I have experienced these symptoms in one or both ears regularly for about 5 years, and was diagnosed with PV 3 years ago. It is sometimes mild, but other times intense and uncomfortable. I was on hydroxyurea for only 1 month, and am now on Besremi, so my pulsative tinnitis has been present both with and without these medications.
There are many possible causes for pulsative tinnitis listed, but it would be interesting to see how prevalent this is within the MPN community. You stated that there is evidence that hydroxyurea may affect blood flow dynamics. Some of the causes for pulsative tinnisis relate to blood pressure or blood flow restrictions in the ears, head, or neck. MPNs have also been linked to vasoconstriction that reduces blood flow. In your case, is the pulsative tinnitis caused by the disease itself, the hydroxyurea, or from other unrelated causes?
HI, I am not sure really how its related i was diagnosed a few years ago but have had tinnitis about a year, but the side effects i get from the meds seem to be this past year and none in the beginning. I am allergic to several medications now that i took for years but no longer can. I am waiting for a Audiologic Evalution and Tinnitis Evaluation. Theyre slow to call so it could take a while. I gurss i will know more then. I mostly hear my pulse at night when i walk up the stairs (3 flights) to my bedroom. I thought it was the altitude (kidding), but it's quiet so i'm pretty sure that's why. I'll let you know when i find anything out! Appreciate your response.
I experience tinnitus constantly, likely due to both progressive hearing loss and the MPN. It was worse when the erythrocytosis was worse. The only time that the tinnitus is pulsate is when I have a cooccurring ear infection.
You can get tinnitus as the result of MPN microvascular issues or more rarely as a hydroxyurea side effect. I believe it is uncommon but possible as a HU adverse effect, however. If the ENT did not find anything in the ears to explain the tinnitus, then it is reasonable to look to either the MPN or the Hu as the cause. Best to consult with a MPN specialist on that issue.
In my experience various meds can cause T. One Sjogren's med did it to me suddenly after 2 weeks. Another re-upped the T more. But mine is not the Pulsative sort.
My ENT Dr suggested Lipoflavinoid. It's on Amazon. It works very well for me at just two pills a day. I had to stop for vitamin B6 overload, (big doses of B6 were hiding in a low dose melatonin) and the T was clearly worse, now better again with a restart. It's most likely to work if started sooner after the T starts. But I can't say for sure on the Pulsative version.
Hi Kareneliz,Had the same experience. My pulsating tinnitis started about 5 months after my diagnose and prescribed Hydrea (1000mg daily except Mon/Fri - 500mg).
Been to a ENT but a total waste of time and money - no idea about MF or Hu.
Living with it now for last 6/7 months with no help anywhere. Even my haematologist don't accepts HU can be the culprit (same as he won't believe HU causes my shoulder bone/muscle arthritis-like pain).
I did receive a message from a friend that were using HU - as soon as she went on the Jafaki instead of HU - her arthritis -like pain cleared
I think it would be helpful if all those who have experienced tinnitus after taking HU completed their relevant countries medicines regulatory body. Eg:
I have tinnitus but not seen anybody about it but have read it it a symptom of ET /JAK2. It is the most annoying problem and some time becomes unbearable. I send you my best wishes with this issue.
Hi. Yes I get it in my left ear. I seem to go through phases of it and it can be quite strong and unpleasant. Sounds like my pulse really loudly and if I walk upstairs etc it gets worse. I was getting it sometimes before I went on medication. I have had it for periods of time whilst on hydroxy and currently I am having quite a bad case of it whilst taking Rux. So for me I see no connection to medication. I think it is more related to my PV and it does worry me but when I mention it to GPs and at haematology appointments no one makes anything of it. My blood pressure isn't too bad but I assume it can be different in different parts of the body. I hope you manage to get it sorted as it is very unpleasant.
hi. Yes I get pulsatile tinnitus in my left ear. It is almost always associated with anaemia and helps me to judge when I need a blood transfusion. I find it incredibly irritating. I find it helps to put music on to distract me
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ET and Pregnancy 
Hydroxyurea vs interferon for younger patients
Questions about switching from hydroxyurea to interferon
How long for hydroxyurea to lower platelets? 
