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
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Kareneliz
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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.
Thanks Hunter, with all the comments I’m getting it appears it’s more common than I realized. I do have an appt for some tests , it takes forever here for them to call but I’ll post more when I get results! Much thanks !!
I would like to say again how much I look forward to your comments and advice. We ares truly blessed to have you as part of the community. My heartfelt thank you.....
This is the very first time I have ever question one of your comments. Could you please forward any studies, info, etc. which links an MPN (ET, PV, MF, HU) with tinnitus?
MPN's have many possible effects. It's easy to proffer an MPN the cause of a condition, but tinnitius? Tinnitius is very common even for those without an MPN. Does anyone really know the cause of tinnitius?
With that said, after taking a suplement for a week or so, I experienced major relief. The supplement contains glutathione, NAC, Quercetin, resveratrol, milk thistle, ALA, Berberone and Vitamin C in 1 pill. It's called GLUTA GUARD by Nutracuticals. What specifically helped, hell if Iknow, but it didn't hurt.
I actually questioned it because i read this online.
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; therefore, it's important to discuss any concerns with your doctor if you experience new or worsening tinnitus while taking hydroxyurea. There actually were several articles which questioned it in my eyes. Thanks!
Thank you for your kind words. I am not surprised that this combination supplement worked. It contains several biologically active agents that are thought to be helpful when treating a MPN. I take L-glutathione and milk thistle extract separately, along with curcumin. It definitely helps.
The issue with tinnitus comes up on the forum since so many of us experience it. You are correct that many people get tinnitus without a MPN, particularly as we age and develop aural issues. Tinnitus can occur for a number of different reasons. MPNs and microvascular issues are only one of them. You will find references to MPNs and tinnitus from a number of sources. I listed a few. There are more.
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.
Thank you i can mention this to the ENT but i am thinking it's a completely different result with Pulsative Tinnitis! It can have so many different causes or none to be known! Glad your doing better and i do hope that continues!! Thanks for replying to me!
For what it's worth, T of both types comes up frequently in the Sjo forum, suggesting it's not unique to a specific disease or med. Age is likely part of it.
Thanks for the wishes and agree on the continue part for all the other things.
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 have also experiencing the complete lack of knowledge regarding Doctors and MPN's period! My ENT never heard of it and did minimal research in frone of me about the HU causing it! It was weird my Hemotologist asked me one visit if i had any pain, at the time i didn't and weirdly about a week later i starting getting leg pain so my PA sent me for xrays and i was found to have Osteoarthritis Moderate to severe. I have a 3 story condo so the stairs hurt more of course in the morning and night. Have you seen anyone about the shoulder pain? I started on Tumeric, then i went to Mayo Clinic and the Specialist told me to stop it, and also take 2 low dose aspirins because of my Pulsative Tinnitis not my legs! Good luck to you and thanks much for answering my post!!!!
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 am in the US Arizona to be exact and i will look into your links. I did search the DMSO and is it always in cream form? It appears pretty harmless and i think i'll ask my Pharmacist about! My hemotologist like many Doctors knows minimal info about medicine, he often tells me it's out of my pay grade. My brother who is an Anesthesiologist, and he of course knows everything about them! So i rely on my Pharmacist. Thanks for the links and answering my post, it's appreciated!!
The pharmacist will almost certainly know about it as it is used a lot in medicine still. However he may not know about its use for tinnitus.
The Substack of: “ A Midwestern Doctor” has been running a whole load of info on DMSO so worth looking at. Lots of books on it too with how to use it.
I have DMSO as a liquid and have used it topically for knee pain etc. Apparently used a lot by sports people for aches and pains. My husband told me he was given it to treat his shingles many years ago.
It has many uses, is very safe. But you will need to do your own research as current medical folk won’t know about it and what it can be used for . I always keep it in stock as it is helpful for so many conditions.
Thanks so much! I saw the ingredients on Amazon and your right looks entirely safe . I will ask my Pharmacist she will look things up for me and research them. My brother actually may know as well, he appears to know everything lol a bit difficult to talk to but sometimes it’s worth it!!! Thanks again appreciate it !
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.
Is yours Pulsative or the Ringing in the ears? It's annoying and causes me at least more stress then i need at night before bed! Good luck to you as well and thanks for answering my post!!!!
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.
I am sorry to hear you are suffering so much with this! When i went to Mayo my Doctor told me to see a Neurologist. I made the Appt but they were impossible to deal with so i cancelled and went to an ENT. They of course seemed more interested in my sinuses not my ear! I am getting a few tests if they ever call me for an appt. It's a Audiologic Evaluation, and Tinnitis Evalution. That sounded reasonable so i will follow through with that! I hope you can find some relief as well and thank you for responding !!!!!!
Honestly i think you should check this out! Have you told any of your Doctors? An ENT is a start or a see an ENT and possibly a neurointerventional radiologist. Good luck to you and thank you for responding.
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
It is irritating for sure! Sound therapy can help with pulsatile tinnitus by distracting you from the sound. So your doing the right thing!!! Good luck to you and thanks for your response!!!
Hi. Yes I had hearing problems and pulsative tinnitus end of last year into start of this. Been on hydroxy 3 years. I had a grommit fitted and it has been a lot better since then. Hope you find a remedy
Thank you I looked up Grommits , used on kids after surgery. Do they only need to be fitted once it said they last 6 months to a year ? Thanks for the info, appreciate it!!!
I noticed some episodes of general tinnitus pre diagnosis and also mentioned to my GP that for a while (a few weeks?) I was noticing a loud swhooshing noise when I lay down at night which seemed to be in synch with my heartbeat - I now realise that was probably pulsatile tinnitus. I don't exactly remember when it receded; I think possibly after I was put onto aspirin/Clopidogrel but before I started on Interferon. I therefore think it was probably related to BP, stickiness of platelets or low ferritin rather than a side effect of treatment. I have hearing loss in one ear anyway but this stood out as different to anything I'd noticed before.
Seems a lot of us have it even though it’s considered a rare tinnitus. I notice mine gets bad when I get really stressed. Right now I hear nothing and it’s 7:30 am. Happens more at night! Good luck to you and thanks for the response!!
I was diagnosed with ET Jak 2 three years ago but I suffered pulsatile tinnitus for some time before this. GP checked for any abnormality in blood vessels in neck but these were OK. I take hydroxycarbamide 500 mg on Monday - Friday with 1000 on Saturday and Sunday. I do not think it has anything to do with my ET or hydroxy. I am 82 yo and this tinnitus can often affect older people. I have it in both ears but more marked in right ear.
I found it very annoying at first - keeping me awake as it always was worse when my head touched the pillow. However, I have become very used to it once I stopped worrying. I read a lot about it at the time and discovered a method of helping it. Take a good deep breath whilst holding your nose and then swallow. You find the noise a lot less or away. It of course eventually is noticeable again but you can apply this method again. It has helped me a lot when the tinnitus is particularly loud.
I do hope this helps as I know how distressing this was for me at the start.
I had / have a loud pulse noise in my ear intermittently over a two year period. (I have Post ET MF ) I was told ( by local haematology ) that it was because my Iron was low? Ferrous fumate taken every other day. I do not know if that is the same symptoms as official tinnitus? But it was/ isn’t pleasant. Happens less these days?
My pulsative tinnitis matches my pulse . It's only in one ear but if you take your pulse and listen to it beatng in your head it matches ! If it's a ringing you get that is different yes. Equally annoying my mom has it and many other people i know as well. I hope you contimue to get relief, and thanks for the comments!!!
I had ringing tinnitus back in 2014 -2015 in one ear only. I visited my GP and had an MRI but nothong detected. I had severe wear and tear in my cervical vertebrae and put it down to this . Then it disappeared only to re occur occasionly.
I was diagonosed with ET in 2023 and tinnitus was mentioned as a symptom.!
Oddly enough it came back a week ago in the same ear but more of a pulsating type.
I just recently went to a ENT, and she advised me i needed a MRA not MRI for Pulsative Tinnitis. I haven't got that far yet but ill post if i do! Thank you much!
I was diagnosed with primary myelofibrosis in July and started ruxolitinib then. I developed pulsatile tinnitus in August. I hear the whooshing sound, in time with my heartbeat, when I sit or lie quietly. The ruxolitinib decreased my hemoglobin, which was at the low end of the normal range at diagnosis, by about 10%.
My hematologist attributed the tinnitus to my anemia.
Someone above mentioned low iron and I saw that as a cause when I was researching it. But low iron is not my issue.
This is from the Cleveland Clinic: "Anemia may increase your blood flow, which may in turn affect your blood vessels and cause pulsatile tinnitus." - my.clevelandclinic.org/heal...
The tinnitus, while annoying at times, is not top of my list of worries. I did try the breathing in and swallowing suggested above and found it quiets the tinnitus, but only for a matter of seconds for me.
As I said, I have other more pressing concerns to worry about but since no-one else has mentioned the (not low iron) anemia connection I thought I'd chime in.
I'm very similar to you and have put the pulsatile tinnitus in my right ear down to the anaemia from my post PV MF. Its worse when I'm more anaemic and tends to occur on lying on the right side or going up stairs and doing any exertion. I usually take it as a sign that I need to do my darbopoeitin injection which I tend to have every 2 weeks or so for the anaemia linked to my Rux treatment.
Heidi, thanks for your response! I have never been diagnosed with Anemia, I went to an Audiologist and she said I have some minor I believe hearing loss at high pitched sounds but I hear fine I think at least! I hear enough ❤️ Good luck to you I know it can be annoying !!!!!
Thank you for your response! I understand we all have to pick our main priorities in life and concentrate or stress unfortunately on those. Wishing you the best always!
One more here - I have had pulsatile tinnitus in my left ear for a long time. It's odd though as it can come and go. Usually a whoosh or sometimes a whistling sound. I had it for years, then it reduced to where it wasn't even noticeable, then came back, and now I've been without it for probably a year or so.
Mine is also influenced by the position of my head / neck. I can usually turn certain ways to make it more or less pronounced. I can also apply pressure to my neck below my ear which reduces blood flow and that shuts it down.
Overall it's nothing I worry about. I saw an audiologist at one point to have a look at both this and also a slight loss of low range hearing in one ear. Went as far as an MRI for both ears but nothing out of the ordinary found.
Amusing side note - audiologist was surprised that I could even tell I have any loss of low range in one ear - it's not even detectable on their equipment. I'm an audiophile and tested it with my own headphones and showed him on a graph exactly where it drops off (around 200hz). He basically told me with a laugh to be happy my hearing is so good and to get out of his office.
I have hesitated to call it tinnitus; it sounds like an army marching through snow. it used to be very loud and I went to the surgery. I saw I doctor I hadn't consulted before and described the sound I was hearing (it was very loud), and he said, "it could be a symptom of anaemia; I'll make you an appointment with Haematology." So when the appointment came through, I found myself having a lot of blood tests and then the bone marrow biopsy that led to my diagnosis of MDS and MPN. I am only on watch and wait, aspirin and erythropoietin injections - no heavy medication at all. The MDS is refractory anaemia with ring sideroblasts and thrombocytosis.
The army is distant now, but it does get louder occasionally. Since my diagnosis, I have never bothered to get it checked out any further. It does seem to be tied up with heart beat or pulse.
That was one clever GP. So sorry he retired soon after.
Bit late here but after having tinnitus in one ear since the mid-70's it transformed to pulsative tin. in both when I went on Rux. after being on hydroxy for 12 years. Coincidence ? My consultant believes it may be due to the hydroxy and anaemia I have. Whilst annoying it thankfully doesn't affect my sleep and just ignore it as best I can....
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