Hello my MPN family,
ET with JAK2+ on Pegulated Interferon Apha 2, 135mc every three weeks. I been having Tinnitus in my both ears and I would like to ask if anyone else have this experience and if anyone is using any medication or herbal remedies for this? Please advise.
Tinnitus can be a symptom of ET but can also be a side effect of pegylated interferon.
Worth speaking to your doctor but in the meantime try not to dwell on it - it makes it worse!
I do anyway, since I have it for long time now. Thank you for your advice.
Is it pulsatile tinnitus (the noise varies with your heartbeat)?
If so you might get some relief from keeping well hydrated and doing what you can to lower your blood pressure.
How are your platelet counts?
My blood pressure is normal and my platelets at 286 and tinnitus is constant not pulsating. I drink up to two liters of water a day.
Tinnitus was one of the
Sorry lost control of pad,Yes Tinnitus was part of my diagnosis of P V,along with other worse things of course,still have it now usually when I am tired,it comes and goes,I am used to it it now try to ignore it,easier said than done.
Best wishes.
Same here Inca. I wrote about tinnitus last summer, when my thrombos jumped up and it was really loud, that I could hardly fall asleep.
I must say, the I also had a stiff neck and jaw. I did exercises to fix that. Reducing the thrombocytes and loosening neck and jaws reduced the sound considerably, but I still have it. I’ve also got used to it.
I always have a stiff neck and jaw....blame stress and anxiety !
Try to exercise neck and shoulders too ,wake up with stiff neck...ears ringing just now,I am anxious about some tests tomorrow,sure it is all connected,Best to you .
I know many exercises for neck and jaw, because I was an opera singer. They are very handy and work well. They are tiny exercises, but are done in many slow repetitions for 3-5 minutes a few times a day. Get a good physiotherapist, have a few sessions. You’ll learn for life. Make sure they explain everything. 😁
Thank you for sharing your experience. I too have neck stiffness and I also do exercise to help my neck and it works to release neck stiffness.
Oh wow ,how very interesting. All my family are musicians ,Jazz tho !
I am sculptor so have my head and and body in odd positions ....is you r Physio ok re your M P N, I have not found one near who would be happy to work on a person with an MP N.,just do simple things off yoga sites! Seems to help...getting too old perhaps for complicated work,eg fighting stallions,deer jumping fences !!!Thanks for your input ,very best wishes.
Hi Inca,
I’m in Austria. Physiotherapists have no problem working with cancer patients. They usually get in touch with the doctor if they need more info. Discrimination can happen with cancer patients, but it is rare, since we are protected.
I don’t have a physiotherapist right now, but have learned a lot from them. A good one is priceless! My ex fiancé was a one; also an orthopedic. He used to practice on me, while explaining to me what he had learned in training. Ouch! After a horrific car accident that almost took my life, Physio finally fixed me, but 13 years later! 10 years ago, my knee had ripped while skiing. My toes were looking at my behind. That accident was fixed, but now I have new problems due to it: today‘s diagnosis: arthritis in both hips due to the 1cm tilt in my hips that the doctor never mentioned.
I say over and over again, that I’ve lost 80% of my trust in the medical profession due to so many mistakes. If I lived in the States, If be a billionaire from law suites. 😂 Each practitioner is much too specialized and has trouble seeing the whole picture. There is so much info available, through countless studies. Who can ever keep up? And... every patient is different. We need a team to take care of us properly. I put one together after spending €3,000 to find the right doctors. I am now on that, which I think is the right track!
Cheers. Anag
Hi again,
Iam in France,long way from a city where I would find a good physio,when in UK ,I see a a good one who looks after the para Olympic teams,for my hips and back.Now I have to have a hip replacement!!! Competing with horses and breeding competition horses most of my life has caused that!
What awful accidents you have had.I have a few broken bones fixed with metal rods! All horse related.
Now of course with P V 'progressing'to MF ,I get very weary,just manage to work mornings.Do have to go to Toulouse next week to see an eye surgeon,we are South West between Toulouse & Bordeaux well into the quiet countryside.
I would love to see the Lippizaners in Austria,might make it there one day!Have seen them performing their amazing performance in U K they did some years ago.
I agree about our treatment and lack of knowledge about it by medics.I am so lucky that I was diagnosed here,as our nearest hospital in Agen specialises in blood maladies.I am looked after well,have had the same consultant for 11 yrs now.The M P N forums in U K are excellent,tho only been to two ,the American Specialist Dr Mesa seems on the ball and U K s Proffessor Harrison.Just before I came home to Fr.I had been exhibiting in Holland & UK...became very ill,saw a Dr in U K ,who said I felt ill because of doing too much for my age,ignored my red face ,hands ,pains in chest,dizziness......came home saw my medicine general ,who had me straight into hospital,my H C T was over 80 and they could not release blood from my veins it was so thick!!!I was at deaths door my consultant told me afterwards.....so lucky me to get back here!
So I know absolutely how you feel about things.
Well we have moved on from stiff necks!!Keep well now ,no more accidents! Sally
Hi Sally!
Wow! You have had an exiting life! Horses are so amazing and absolutely gracious and beautiful! If you are ever in Vienna to see the Lipizzaner, let’s go there together. I was an opera singer and my husband violinist. He was dubbed a Kentucky Colonel, since he performed for the world equestrian games some years ago. 😄
So, we are in the city of music. Sometimes, I think I would have rather had bones broken instead of the whole tendon and muscle ripping and the slipped discs. But having metal in the body is more than just a simple break. I’m really sorry about that! Also, the psychological weight of accidents is nothing to neglect. That stays with us and should be dealt with. So glad you have good, trusted care.
I can’t believe your blood was so thick! Frightening. Like my dog’s after her car accident, where she had peed in fear and pain and wouldn’t drink. Her blood was like glue.
One of my good friends is a top doctor, university professor, highly respected in a top hospital. She missed my 2 TIA’s. She missed my thrombos, climbing steadily by about 60,000 for 7 years, despite my constant complaining and annual and bioannual blood tests because of my thyroid problem. Even at 700+, that didn’t ring a bell. Brain fog, dizziness, tingling, burning and pain in fingers and sometimes arms, swollen legs, fatigue, even low pressure glaucoma! I was a mess. One morning I woke up and was falling against walls and had little control of my right leg, slurred speech, trouble formulating sentences and finding words, right side of head and face were numb. I was told by my GP, also a friend “it’s just your slipped disc (in neck).
My husband and 13 yr old got me to the ER. I was checked through by the head of the emergency room, (this time friend of my husband’s- 1/2 of all our friends are doctors), for almost 4 hours. Neurologist, ENT, CT. The symptoms were going. I finally insisted on a blood test. Bingo: 823 Thrombos.
I was sent home with an appointment for the next morning in the hemotology unit. As I got home, I read the results and look up thrombocytes. Big Ben tolled over me and I went to the med cabinet, took out a Fraxiparine injection (anti Thrombotic) that was left over from my dad who’d passed away. It had expired a year already. I didn’t care. I jabbed it into my belly. And I took a 400mg aspirin on top of that. The next morning another jab and I went to the hospital. The doc said, I need to give you a shot of Lovenox. Well, I’d already done that and I accused him for not giving me one on the spot the day before. I know today that a TIA is often a warning sign before a massive stroke within the next 24 hours.
Mistakes by doctors on all sides. Same with my daughter’s rheumatism at 2, my husband’s cancer treatment, and so much more. I’ve almost given up on mainstream medicine and have tried everything possible (with alternative doctors) to clean up toxins, removed all amalgams and suspicious root canals, fix gut and biochemical imbalances. All GMOs, chemicals, additives have been banned from our lives and home. That took 2 years to master. We are all much healthier today than 10 years ago. We now produce 1/10 the garbage. I still need to work on deciphering and dealing with past trauma and need to step up exercise. I am hoping that in 3-4 years, my body will be taking care of itself and it might come that my ET will stop or even go back. Who knows? It’s a challenge and an experiment. 😉
All the best to you! Anag
Im the same diagnosis as you light, and I’ll be starting on pegasys soon. Following this thread and will report back once I start.
Hi - I have ET, Jak2+ and am on 90 mcg of Pegasys fortnightly and yes I have tinnitus. Like applesnpears said, you just have to try to ignore it
Mark
Yes I do too but yesterday I was waken up by much stronger and louder piercing noise on my left ear. This concerned me.
If there are sudden changes, out of the ordinary, it’s good to get checked by an ENT. Also, the tinnitus is worse, when I have sudden blood pressure changes. I usually have 105/70. When I’m at 125+ resting, the tinn gets worse. If you have a blood pressure machine at home it’s good to check the pressure and amt of tinnitus and compare looking for a correlation. 🙂 Anag
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Thank you so much.
ET Jak2 on baby aspirin. Regularly have tinnitus. Have learnt to ignore it
ET, JAK2+, hydroxy. After starting hydroxy I developed Tinnitus and suffered for 11 months until it was discovered that my folate was really high. Dr. said inside of mouth looked really red and sent me for blood test. I stopped taking my multivitamin that I had been taking for years and 2 weeks later my head stopped pounding.
These two things helped me and I hope they will help you.
1. To help me sleep I would listen to waves or pounding surf and breathe with the wave action to negate the pounding.
2. Place palms on ears and thump the soft spot at the base of your skull with your fingers for 15-30 seconds. Should resonate and feel like your head is the inside of a drum. Makes tinnitus go away for awhile for most people.
Just tried this! This definitely reduced the tinnitus. Question is, why? I know covering the ears was loud then the difference in sound was huge. But, the thumbs sit on a spot that usually get an injection by an orthopaedic, when there is terrible neck and shoulder stiffness. Hm.
I hear the tinnitus a bit more now. 5” later. Must check into this further.
Cheers Anag
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