Loud rumbling tinnitus

Taking Hydroxy and indepamise and right now how extremely loud tinnitus in my left ear. I recently saw an ENT consultant and had a nasal endoscopy which exams the sinusus and ear canals. l was told there and then there was no cancer tumours to be found,wow what a releif for me. However this loud banging or what some describes as pulsitial tinnitus persistes has anyone experienced this kind of problem which also seems to be as a related to a head thrombosis/bleed and ET.

[hunter5582]

Yes to tinnitus being related to ET and other MPNs. You will find this in the literature as well as from reports from others on the forum.

Here is just one example.

entokey.com/pulsatile-tinni...

I have had tinnitus for a long time. it comes and goes with no apparent pattern. I have just learned to ignore it. I do also have mild hearing loss that is not related to the MPN.

Always hard to say what is what with a symptom like PV that can have many different causes. Hope you get is sorted soon.

[Hidden in reply to hunter5582]

Thank you so much Hunter very helpful report,its true to say l had raging tinnitus for months if not years before a sudden episode of cerabal venus sinus thrombosis then a later diagnosis of ET could be linked to ongoing tinnitus. Anyway learning to live with it is the way forward at the same time will check my platelet counts and mention to hematologhy next week. Once again thank you and many blessings. Adiewon

[Lasbrisas1 in reply to Hidden]

What meds were you given for Cerebral VST

[Pte82]

Adiewon2, Hydroxy and diuretics deplete magnesium. Check with your doctor about using magnesium supplements with your meds. Check on the association of low magnesium with cramps and tinnitus. A white sound machine offers a way to manage tinnitus so you can get your rest.

[Hidden in reply to Pte82]

Hi Pte82 thank you so much for your help currently taking magnesium it rely has helped me with cramp especially l also have a white noise machine that helps manage night time tinnitus. You have hit the nail on the head about getting rest, this month has been full on for me with lots of anxieties around meds and getting out and about in the community . Im still so fearful about meeting strangers and travelling out of my comfort zone. Thank you for helping to flag this up for me.

[Pte82 in reply to Hidden]

Yes, I wrote white sound, it's white noise. You'd think after working 30 years at a plant making white noise machines I'd get it right the first time! Adiewon2, search on "anxiety thiamine" for possible relief.

[Hidden in reply to Pte82]

Thank you for your reply lm very impressed you made 30 yrs at your plant you must have a lot of memories about your time there. Anyway following up on your suggestion about thiame,l have alot of anxiety and need to incorporate more rest into my days. ThanksAdiewon

[Pte82 in reply to Hidden]

My most vivid memory was talking to tinnitus sufferers from around the world who were becoming desperate for relief so they could sleep because the antidepressants their doctors immediately put them on wasn't working. This link contains information about forms of thiamine that are more bioavailable especially in the brain that may offer better results for anxiety. Also check out a form of magnesium called threonate. It too is more bioavailable in the brain and is needed to turn thiamine into it's bioactive form.

nootropicsexpert.com/vitami...

[Hidden in reply to Pte82]

Thanks so much Pete82 l was so low beginning 2021 doctor prescribed antidepressant . My body hated the stuff and all of my MPN symptoms just whent crazy and not in a good way,somthing similar happens to my MPN on calcium channel blockers, but let me stay on point. After a week or so l told my Gp how ill l was feeing and that l would go my own way turning to CBT therapy things improved dramatically over a period of 6 weeks. One of the blessings of my MPN is that my body/mind has become more responsive to what meds help or not a blessing and a curse for my hematologist team.Currently l take 2 capsules of magnesium glycine but will defo give threonate a go. Thank you so much Pte82 for your speedy response.Adiewon

[Pte82 in reply to Hidden]

Suggest continuing mag glycinate with supper and threonate with breakfast. Do a glycinate vs threonate search for more info. Also search on "krispin magnesium" for a list of causes of magnesium loss and a formula for daily magnesium.

[Hidden in reply to Pte82]

Great will check magnesium levels although l do take magnesium and have have a sound machine,thanks for your reply Pte82.

[beetle]

Yes I get pulsatille tinnitus that sometimes sounds like a troop of soldiers marching through my head. Mine is linked to my haemoglobin level. ie it is much louder and more pronounced when I need a transfusion (I have MF). Like Hunter I do my best to ignore it but at time I find it helps to have some noise nearby such as music or radio or something else to concentrate on. Best wishes

Jan

[Jim1949]

My tinnitus has also increased dramatically. The VA did all the tests and found nothing. Does anyone know if changing mediations would help? I take 1000mg of HU daily.

[Hidden]

Him Jim unsure about change of meds,my tinnitus began just before my diagnosis of ET/PV, and there seems to be a defo link with tinnitus. Don't stop taking your meds without getting a second opinion from an MPN specialist. Take careAdiewon

[Hidden]

Hi Adiewon

I had sudden tinnitus onset last May.

It can also be caused by many of our medications including aspirin. All are ototoxic. Around 15% of the population have tinnitus. It’s a very common condition. Most people habituate in time and tinnitus becomes a background noise. I found Julian Cowan Hills video and app very helpful. He has helped many people to reach habituation

juliancowanhill.co.uk/

I had several appointments at a tinnitus clinic here in Berlin.Magnesium can help plus de stressing. Stress can exacerbate tinnitus. The more you focus on it the worse it gets.

What helped me the most was a hearing aid. Worth trying. My hearing loss was in the high frequencies. When l wear the aids tinnitus disappears. At night sometimes l get it in silence but l have got used to it

[Hidden in reply to Hidden]

Morning Dovme well thank you so much for the link to Julian right up my street,also the app Quiten is most helpful. Thank you again💤