ET RINGING IN THE EAR

[shiela23]

ET RINGING IN THE EAR ?? does anyone experience

[Tartanlady]

Hi Sheila, yes I have permanent ringing (tinnitus). Through the day when I am busy and their is general noise, I don't notice it the same but when it's evening and especially when I can't sleep....its deafening! I was diagnosed with MDS/MPN Crossover Syndrome over 2 years ago and have low haemoglobin and high platelets. Specialist seems to choose to ignore this every time I mention it 🤔

[shiela23 in reply to Tartanlady]

because my problem also is my imbalance im swaying all the time is it one cause of problem in the ear ???

[MaggieSylvie in reply to shiela23]

It could be. See your GP.

[MaggieSylvie in reply to Tartanlady]

Hi Tartanlady, I was diagnosed MDS/MPN overlap in June two years ago and the reason I got tested at all was because of the thumping of my heart, particularly when trying to sleep was like a Russian army tramping through snow. A colleague of my GP referred me to a haematologist. My haemoglobin this week is 79, generally rising and platelets are 578, down a little from 620 at the highest. I'm on Watch & Wait and aspirin. Those tramping feet are much less noisy nowadays but I don't know whether the aspirin has done that. Your tinnitus may or may not be related to your condition because it's not the same as mine, but mine is sometimes referred to as tinnitus. I know it can be hard to live with, so you need to push your GP for some help.

[Tartanlady in reply to MaggieSylvie]

Quite honestly, I don't bother even trying to speak to a gp let alone try to see one face to face. It's so soul destroying when they simply brush it off as irrelevant.

[MaggieSylvie in reply to Tartanlady]

See all the other people who have tinnitus! It must be to do with ET, and it's not something to be swept under the carpet. There is probably a group forum for tinnitus where you all might get advice on where to go for proper help.

[blueseas45]

Hi shiela23. I have ET and have ringing in both ears all the time.

[krotsida]

Me too.

[Airslie in reply to krotsida]

Me too! So annoying 🤨

[hunter5582]

Me too. Being going on for years now. It does come and go in intensity with no apparent patter. I just ignore it.

[Hidden in reply to hunter5582]

Ringing in the ears but sounds do vary lying down for sleep is the worse it's also global for me meaning trying to pin it down to a particular ear doesn't help.🦻🦻are these ears....Adiewon

[Ratton726]

Yes me too- have occcasional ringing in ears-(I do have a hearing problem ) wear hearing aids. Was asked during hearing test if I get tinnitus I said sometimes! I am over 70!Also have E. T -but ear problem was long before ET discovered!

[YBSx]

Hi. Yes I get this too. I’m ET jak2 positive. I have established it’s worse when my platelets are over 400. When my platelets reduced to 370 it’s stops

Yvonne

[Lemon123]

Yes, me too. I have ET Jak2+ .

[Oscarsboy]

Me too. I have it at present and swaying feeling. I am still waiting for treatment and presume that until my platelets lower I have got to live with it. Also ET JaK2.

[shiela23 in reply to Oscarsboy]

that's what im experiencing right now im swaying all the time... is this related to the ET??? what is jak2 means? i don't have any idea about this...

[Oscarsboy in reply to shiela23]

It certainly is listed in the symptoms as one of those being prevalent in ET. The explanation for Jak 2 gene I am copying and pasting in

.JAK2 gene

A gene that makes a protein that sends signals in cells to promote cell growth and helps control the number of red blood cells, white blood cells, and platelets that are made in the bone marrow. Mutated (changed) forms of the JAK gene have been found in some types of blood conditions, including polycythemia vera, essential thrombocythemia, and primary myelofibrosis. These changes may cause the body to make too many blood cells.

Mine is making too many platelets. Hope this helps Sheila.

[IrishHiker]

Non-stop since my mid 20’s am 66 now.

[IrishHiker]

pubmed.ncbi.nlm.nih.gov/204...

[LadyAbash]

Hi Shiela,

I suffered ringing in one ear a year or so before my ET diagnosis. I also suffered vertigo with a diagnosis of issues in my inner being the cause, four years before my ET diagnosis. So ask your GP to have your ears checked including a check for loss of hearing due to the ringing in your ear. I think it's best to have everything checked so you know what you are dealing with. You can also have your hearing checked in places like Boots Opticians, I think it's free over a certain age. I hardly notice the ringing in my ear because I am always too busy to be affected.

All the best!

[Bellakeira]

Yes i have PV and it drives me crazy at times I also mentioned it to specialist and he didn’t really say anything lol

[Dovme]

Me too! I have had chronic tinnitus for some 3 months. I attend a Tinnitus clinic here in Berlin. My understanding from discussion with tinnitus experts is that Tinnitus affects some 15% of the population. Causes of tinnitus can vary, stress, hearing loss and certain ototoxic medications. I was initially prescribed an 11-day cortisone treatment which seems to work for some unfortunately It didn't for me. I had a lengthy series of hearing tests saw an ENT consultant and a Psychologist.

I was given daily sound therapy exercises to do, plus a self help guide to autogenic training to help reduce stress. Tinnitus is reactive to stress. Like a switch the more stressed you are the louder the tinnitus spike seems. The clinic also prescribed 300mg daily of Magnesium plus somthing to help me sleep. I have several sessions booked with an osteopath for craniosacral therapy. They also me a prescription for Tinnitus hearing aids called noisers that provide masking and notched sound therapy. But I believe Hunter's and others approach of ignoring the tinnitus is the best method . Not easy to do but I find that if I am absorbed with other activities, I don't hear the tinnitus. I believe I am gradually excepting it

I would really recommend checking out British psychotherapist Julian Cowan Hill. He has lived with Tinnitus for years. His videos have helped me more then all the treatments. youtube.com/c/juliancowanhill.

The goal is to achieve habituation where tinnitus becomes a background noise that the brain filters out. What's encouraging is that most people achieve this

[Pte82 in reply to Dovme]

Dovme since you have been prescribed magnesium build on it by first researching thiamine, which needs magnesium to become bio active, and a possible tinnitus connection in addition what it does for the brain and the rest of the body. Three forms of thiamine, Benfotiamine, TTFD and Sulbutiamine are well absorbed and along with B12 in the form of methylcobalamin or hydrocobalamin are good for the nerves. I suggest you research this group first for your tinnitus. Then learn about the other B vitamins. Magnesium helps protect our hearing from loud noises however loud noises cause loss of magnesium in addition to other causes listed in the krispin link. The last link contains factors that interfere with thiamine. To get your rest at night use white noise which masks the sound your hearing. Always consult your health care professional before using any supplement.

ncbi.nlm.nih.gov/books/NBK5...

krispin.com/magnes.html

stuttersense.blogspot.com/2...

[Dovme in reply to Pte82]

Interesting and thankyou l will check that out. Haven’t masked in the last two months. My therapist prescribed a low dose anti depressant that works great for sleeping and no side effects.

[Pte82 in reply to Dovme]

Your welcome Dovme. One of the interesting side effects of Hydroxyurea is magnesium loss. Boron helps in magnesium absorption in addition to it's own benefits. Search on "nothing boring about boron".

[Runner999]

Why would it be connected to ET or other MPNs ?We can all get other diseases and conditions just like anyone else!

This site shows prevalence of tinnitus by sex and age :

nidcd.nih.gov/health/statis...

[MaggieSylvie in reply to Runner999]

My GP said what I was experiencing was sometimes a symptom of anaemia - hence my visit to a haemotologist who eventually diagnosed MDS/MPN without JAK2 or any other gene mutation.

[azaelea]

I have ET JAK 2 and wear hearing aids since recent hearing deterioration but no tinnitus but I knew I had wax and saw an Audiologist last Monday who said there was no wax but since then and his examination I have been totally deaf in my left ear, having had to consult my GP who confirms there IS wax and I’m on drops 4 a day for a week with further appointment when hopefully the Nurse will remove the compacted wax. I also wonder if it could be related to ET.

[Tartanlady in reply to azaelea]

I actually had a hearing test and they said I had hearing loss and that a set of £2500 hearing aids would help and may help with the tinnitus....but it's mostly through the night when I can't sleep it bothers me so thought I wouldn't bother as hearing aids are taken out to sleep 🙃😅🙂

[azaelea in reply to Tartanlady]

You did right not getting hearing aids, and certainly not paying for them . I think my hearing has got worse since having them. I got them free through the National Health and they are decent and quite hidden. You wouldn’t be wearing them at night, as you say and that’s when your tinnitus is worst.

[Meatloaf9]

Hi, I have ringing in the ears worse in the left one. My hematologist wanted me to see my gp and get tested for meniere's disease, I didn't do it since my ringing started when my counts began to rise and I transitioned from ET to PV. After seeing all the responses here I am glad that I decided to just ignore it. Tired of always visiting the Dr. Good luck to you with what you decide to do, best always.

[eastwood1932]

Hi, yes I am another one with tinnitus and ET, don’t think it makes a difference but am triple negative ET. I have it constantly and have had for years now. I have a fan on all night in the bedroom just for the white noise effect, silence is something I can’t cope with because of the tinnitus. Like many here a just don’t mention it to my GP, is a total waste of my time trying to talk to him about it.

[Canbrit]

My husband has PV JAK 2 and he has tinnitus. Started about 5-6 years into his illness.

[BloodZero]

Yes

[Alexbits]

Yes and I think it's not ET/PV related in most cases.

[Reggieru]

Me too

[HelixNebula]

Me too. ET JAK2+. Have been having this ringing for years.

[DJW1]

There is data to show that anemia contributes to tinnitus.

[HelixNebula]

Yep, me too. I don't notice it through the day, only if I'm in a very quiet or complete silent environment. It definitely bothers me, but it seems like my brain learned how to ignore it most of the time.

[GrammyG]

Hi Shiela. My ears started ringing more than a year and a half ago, and haven’t stopped. I was diagnosed with ET (CALR) five months ago due to high platelets. For what it’s worth, my Hematologist said he thought it’s ET-related.