Tinnitus-hearing Problems ET: No doctor has... - MPN Voice

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Tinnitus-hearing Problems ET

No doctor has believed me, but now I know that a reoccurring tinnitus has to do with my ET. Proof below. I’m presently on vacation. My next step is to go to a doctor, get a simple lab and see what my blood work says. If the thrombos are higher than usual, then I’m pretty sure, where my tinnitus and my sudden hypertension is coming from.

Case study below:

advancedotology.org/sayilar...

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Thank you. Very interesting. I was wondering myself. When my platelets are normal my hypertension is more normal

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How are you doing on your anagrelide? How many years?

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Anagrelid (since Oct. 2017) causes me heart pounding and I therefore take my 4 pills spread out over the day. It also kills the collagen in our body. Collagen is important for all our cells elasticity. To counteract this, I drink a 1/3 of highly concentrated organic beef bone broth that I make myself. I simmer the bones for 24 hours. It’s awesome. I look and feel much better. If the wrinkles are being kept at bay, so is the deterioration to all other cells!!

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Hey Anag... :-)

Personally, if you have high platelets, then Tinnitus is much more than just a possibility, and you might be best served by finding a better medical specialist or GP, whatever the case might be?

I have had two (2) TIAs, (minor brain strokes), and in the case of the worse of the two, my very first warning symptoms that I was having a TIA, was... you guessed it – Tinnitus!

However, with some people, it might be that they have a case of diminishing hearing ability... As apparently, it is also a symptom of hearing loss...

However, in your case, and especially if you have a higher than usual platelet count... Just be aware that it might be heralding in a visitation from a TIA (?)

Be careful and find a better doctor, in my view...

Steve

(Sydney)

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Thanks Socrates! You always have good advice.

My tinnitus has been on/off for about 5 years. I know my ET started 9 years ago. Diagnosis oct 2017 during my 3rd TIA. I had 3 light ones after that, which I kept at bay by jabbing me with a anti-thrombotic shot. I take 4 Anagrelid daily and my usual 180mg Ginkgo daily. I’ve upped my 50mg aspirin from 3-4x weekly to daily on my own. Last trip to dr was last June, thrombos at 538. (I’m away from home for the summer). I will be getting my blood checked tomorrow to see what’s happening. Something is not quite kosher. The tip of my nose is tingly, my fingers are a bit swollen and tingly and I’ve got a bit of brain fog.

Have had high blood pressure spells since my trip to Korea in July, up to 140/80. my normal has been 100/60 to 110/70 all my life. Anything over 120/70 and I’m really not well. Many doctors wanted to put me on pills to increase my pressure in the last 30 years, but I always refused, since I felt great with 100/60 as did both my parents and also husband.

My tinnitus sounds like white noise. Just like the old TVs when they weren’t receiving waves.

Cheers, Anag

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Yes, 'White Noise' is exactly how I describe it myself...

Maybe you should be trying 100mg of daily Enteric-coated aspirin.

How is your general health?

When was your last Bone Marrow Biopsy (BMB)? If indeed you have had one at all...? Maybe you need one just to have a fresh benchmark of where things are at for your and your MPN.

My Blood Pressure (BP) problems evaporated entirely via my fitness & dietary regime. It used to be really bad in the 200s...

My platelets are always higher than I wish they were but my options appear quite limited at the present, and that is just another reason why I am doing this epic FUNDRAISER ride around Australia to fund my research into treatments and hopefully a CURE for MPNs...

mpn-mate.com/sponsors/

In my mind, we all need to be our own very best advocates to create better MPN outcomes into the future...

Anyways, down off my podium now, very best wishes and I really hope you can locate some much better professional medical assistance very soon Anag... :-)

Steve

ox

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So, Steve, now that your off the podium, I’ll take my place. 🙇‍♀️ thank you 😁

I was at a normal doctor’s office in the small Austrian town where I’m spending the summer. Lo and behold, he’s an aficionado for biochemistry and is up to date on the latest news and treatments. I got slammed in the face with a blood test showing 909 thrombos while on Anagrelid. He doesn’t know me or my ET and was speechless at the numbers. I was 548 just a month ago!! This also explains the sudden hair loss, etc.

I had already taken an extra 100 mg aspirin this morning, will stay on 50mg starting tomorrow and will increased my Ginkgo to 60mg 4x daily. I have a tendency to dangerous bleeding episodes and in such cases, I stop Ginkgo and aspirin and within 12 hours, the Ginkgo is gone and I’m safe. My thrombos jump around, but I’ve never experienced something so drastic!

My general physical and mental health is excellent since being on the AIP diet. I’ve been restoring my gut and immune system for the past 22 months. I eat AutoImmune Paleo, have gotten 1/2 my amalgams out, have been detoxing heavy metals and doing careful parasite and virus cleansing. I do necessary supplementation (all natural), organic food, make all my own cosmetics and cleaning agents. I wash my clothes with chestnuts that I gathered in the fall. Healthy, healthy.

In the last 14 months, I’ve gathered over 500 pages of notes on health, nutrition, illnesses, etc from all countries that print in English and German. I am my own health CEO and my doctors are partners. I have several good doctors, hemo, TCM, acupuncturist, thyroid specialist. I treat all my ailments, which have almost completely disappeared, with plants and essential oils. No more chemicals unless it’s an emergency. I’m not THAT fanatic. All my docs believe in supportive alternative (complimentary) treatments.

I’ve already started planning my next steps. I will take two Anagrelid tonight at 7:30pm. If I get heart pounding by 9pm, my Anagrelid has been working. Then, why this dramatic jump in thrombos? If there’s no pounding, the pills are duds and then the question is, why?

My plan is to further start an anti-cancer regime, ASAP, which I wanted to start in January, 2019, after my amalgams were all out. My plan includes curcumin, apricot seeds (B17), hoards of blueberries and raspberries, etc.

anti inflammatory essen:

no grains, milk products, sugars, night shades,

papayas, sweet potatoes, broccoli and kale raise thrombos!.

Daily: Bone broth cooked 24 hours, lots of root veggies, salmon oil (2 tbsp daily), no meats except 1 almost raw liver steak weekly (good for my beta thalassemia anemia- I am Greek).

Continuing supplements: all Natural:

B komplex

Vit D 40000 IU weekly

High dosage vit C

Zink

Mangan

Magnesium

Digestive enzymes

CoQ10

L-Glutamine

glutathione

Selen

Jod

detox baths bi-weekly

Liver compress with sage tea bi-weekly to keep my liver running well. (I curse the day I let my gall bladder get cut out of me!)

Exercise

Breathing exercises

Meditation/QiGong

Walking on damp/wet grass

Forest walks

Sunlight support every morning, sleep by 10pm.

Ozon and light therapy for my blood. I’m off to Switzerland for this one.

Blood check and other tests (stool, etc.) monthly to bi-monthly.

Last, but definitely not least, actually first, humbleness and prayer! He’s lead the way for the last 22 months. I trust.

I do much of this already. I Will add 1-2 points weekly to get a working, doable system going and to observe changes. I will try to keep a concise diary of how my body and mind are coping or not coping and will adjust accordingly.

If you have any thoughts on this, or have ideas to add or for me to look into, I’m open to all suggestions! I love learning.

Like you, I have been on a mission to find a cure since I got my diagnosis. I was doing fabulously until the last few weeks. I got a feeling, I was eating too many dark green leafy veggies, broccoli and perilla leaves (yum) which I got to know in Korea a month ago. I brought almost a kilo of them back with me! In other words, tons of vitamin K!! I just might have done this to myself, driving my thrombos up. There’s a reason for everything.

Time to step down. 🙇‍♀️

Thank you for letting me brain storm. 🧠

That felt good. I will go back into my notes and reread. I need to capture what I think is doable for me and discuss with my doctors.

You’re probably snoozing right now. Would love to hear your input!

Anag

Ps. I had a BMB 22 months ago, right after my diagnosis ET CALR. Maybe it’s time for a new one. Why not have up to date info? Yes. A new benchmark. Thanks so much for the tip!

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What’s “bone broth”. ? Doesn’t sound very appetising.

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I have PV with high platelets and one of the first things I remember that caused a problem for me is tinnitus. I've always known (post diagnosis) that the PV is causing it, but doctors don't outright admit it... Been living with this ziiiiiiiiiiiing for 4 years now... Cry

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Oh wow, Chris!

4 years! It’s so annoying. As soon as it’s night and we go to bed, it gets louder!! Actually, all else gets quieter.

I now know that it was always there as I approached 660+, but under that, nothing or almost nothing in the ears. That’s a sign for me and will always help me save myself. Without meds I’m at about 1000. I had 6 TIAs all together of varying intensity. All around 650-823. I walk around with an anti-thrombotic injection in my purse, kitchen drawer, night stand and bathroom. Just in case.

I just can’t understand this sudden jump? I was at the doctor’s this morning and got slammed in the face with 909! A month ago, just 538! I know I’m a kangaroo, but this is crazy.

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Yikes, that is a big spike yes! I also seem to not hear it when I'm around 350 and lower, but without meds I'm around 750 platelets. I started pegasys 3 months ago and counts are going down, but slowly... So the ringing has been there again for about 5 months now.

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Hi I actually have Pv, but an antibiotic caused my tinnitus ( denied by gp ) it was one of the - very rare - side effects.

I was offered Fexafenadine as an antihistamine and guess what ? That also causes tinnitus.

You may of course not be taking any medication, but I suggest if you ever do, to check the poss side effects.

Stress, loud noise, certain foods believe it or not, all affect my tinnitus.

Gp s in my experience aren’t interested.

Louise.

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Hi Loubprv,

That’s is good to know. I found out this morning that my thrombos have jumped 400 up in 5 weeks. Terrified. Have increased aspirin and Anagrelid.

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I hope you find a reason for your sudden jump in your platelets. It’s always a little scary when things change without knowing why. Let us know what you find out.

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I have a whooshing sound in my right ear which matches my pulse. I’m not sure if I have hearing loss but I’m sure it has to do with my PV since it started after my diagnosis. Thanks for sharing the article. I will ask my hematologist about it.

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Hi cja,

If you hear your pulse, the blood is definitely having trouble getting through. Reason? Ear inflammation? Thick blood? Other? An ear test will tell you if it’s approaching hearing loss, harmed celia, or if heading is in tact.

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Thanks, Anag. I keep meaning to look into it. I will soon.

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Hi Anag !! You're not alone. I also have ET and I'm on Pegasys and every time I get my shot it get worse. By now I almost can't hear anything because of the noise !!!

Greetings Yarrowleaf

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Dear Yarroleaf,

I’m so sorry about that! I’m really sensitive to this stuff. I was an opera singer and am sensitive to every little peep. Those who don’t haven’t can never imagine what it’s like. Is there an alternative med for you? You need quality of life!

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This explains my tinnitus and the loss of hearing at certain frequencies, thanks! I can tell when I need a phlebotomy by my blood pressure as it goes up rather rapidly.

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Wow! Glad this helped you. I was at the doctor’s today. In the town, where I’m spending the summer. I’ve jumped from 538 on July 3rd to 909 today!!!! Oh, horror. This explains everything! Am feeling better and preparing a plan of attack. See above.

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Morning Anag... :-)

Yes, you certainly do sound as if you have a huge barrage of resources at your disposal...

I am unfortunately just about to go and do one of my cycling rides, however, I shall answer you more completely upon my return asap!

Pleasant evening Anag ;-)

Steve

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Hi Anag

You’re a person after my own heart! This disease, MPN, which according to mainstream medicine has an unknown cause and for which there is no cure, offers us no option other than to feel victim, or take it upon ourselves to find a way through the minefield it presents to us. It has taken me on an unexpected healing journey, and like you, on the way, exploring what we consume physically, emotionally, and mentally. It’s been a huge learning experience and has led me on a spiritual journey I wouldn’t have otherwise taken. Along the way I’ve learnt about the potential healing power of illness, presented to us as an opportunity to change and heal. At one time I assumed all healing was physical healing, but now I know that to heal the body we must also heal the mental, emotional and spiritual aspects of ourselves. Cancer in particular seems to have dominated the era in which we live. I don’t think this a chance event, but a challenge presented to us at this point in time.

I was diagnosed with PV in 2006 age 58 and find the issue of tinnitus (which has attracted so many replies) interesting. I went to an ENT specialist in the mid 1990’s suffering from tinnitus. He couldn’t find any physical cause and sent me away with the option of having a device inserted to help drown the noise. He suggested I had to learn to live with it. It was only after diagnosis of PV I read that tinnitus was one of a number of symptoms of ET. When I told the haematologist I’d had tinnitus for over ten years (and hypertension) he said, ‘You can’t have had PV that long!’ However, it’s only in recent months that I’ve also recognised that I had a stroke in 1999, but I hadn’t identified it as such. What I’m suggesting is that it appears I’ve had an MPN for many years.

I find tinnitus is often made worse after I’ve eaten, especially salty foods, or done anything that makes my heart pump faster. Sometimes it is so loud I can’t hear the TV, or music on my iPod which is drowned by the hiss. I see tinnitus as just one example of how one small thing can be an indication of something much bigger. We all seem to have multiple symptoms that are widespread, which shouldn’t be any surprise as our blood permeates the whole of our body and the problem starts at stem cell level. But the fact that tinnitus, which can seem so minor compared to cancer, is not taken seriously by doctors. I’ve since read some people feel suicidal for they can’t get away from it.

Like you Anag, I am open to learning and have chosen to use this disease as an opportunity to learn. The medical profession is caught between a rock and a hard place for they are committed to a methodology and funding that constrains creative thinking and exploration. We are not. I have remained quiet for most of the time since joining this forum but find reading the posts interesting and reassuring. Perhaps now I’ve started writing on this forum I might continue. I have learnt a lot as a result of this disease, as well as from reading members contributions. For me it has largely involved exploring and ditching outmoded beliefs, reframing my life experiences and clearing myself of emotional debris from the past, as well as following a more spiritual life.

Thank you for raising this small but extremely important symptom.

Thank you for prompting me to express myself at length!

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Before being diagnosed for about two weeks woke up with a headache and tinnitus - could heat my heart beat - but then it went away. Had one more time but since diagnosis last year have only had one morning - I believe it is associated with MPN’s although some haems say no.

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In my case, the tinnitus never goes away.

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Below is what I've learned online

Tinnitus is the sensation of sound inside the head and is a common symptom encountered daily by otorhinolaryngologists. Pulsatile tinnitus sufferers hear rhythmical noise at the same rate as a heartbeat and can present a diagnostic challenge. In this report, we present a 32-year-old patient with pulsatile tinnitus that led to the diagnosis of essential thrombocythemia. The symptom of pulsatile tinnitus allowed an early diagnosis of essential thrombocythemia and a more favorable prognosis. The case demonstrates the importance of blood tests for all patients who present with pulsatile tinnitus of unknown origin.

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Great info! There are some docs and researchers on the ball, but why is this not mainstream? I have had light, recurring pulsatile tinnitus in my left ear for over a decade. I was an opera singer and it drove me mad. In the last few years, it comes for a month or so, usually in the summer and is constant white noise, when my thrombos are up. I traced my platelets rising 50000-60,000 yearly for the past 9 years. I had 2-3 blood tests yearly to track my Hashimoto. My diagnosis was 2 years ago. The hemo only counted the years after I first reached 550,000. why? The symptoms started even when I was still at 250. I know exactly what it feels like.

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Hi Anag,

I also have vertigo and tinnitus and read about the connection you refer to before my first appointments at the Balance Clinic and Ear, nose and Throat Department. When I mentioned the connection to both doctors I saw neither of them was aware of it. When I went to my second appointments both of them had looked up information about this. They said MPNs are so rare that they didn't know enough about this area in relation to their own specialities. They were nice enough to improve their own knowledge to provide better care for any MPN patient they may meet in the future. They did not just dismiss me as a patient as some may have done. I was very impressed by this attitude.

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Amazing. There are some doctors who are really interested and have the ability to take time to research whats out of the norm. Truth is, all people are out of the norm. Most docs are pressed by the hospitals so much they can’t breath. I was told I had cancer and was pushed out of the room in 7“. That’s all he had.

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I give credit to those doctors who actually admitted they don't know much about this diseases instead of those who just ignore the whole issues. I started to have only little cataract on my eyes(especially right eye)only 2 years ago, have eye test every year, even end last year I was told cataract didn't need to be done for another 10 years plus and my vision was so good although with glasses which I could be without most time, but right eye cataract progressed so badly all of a sudden the last few months jumped from level 2 to level 8, I can see ok but couldn't read street signs when drive, that made me wonder if it's blurr vision is contributed by Hydrea, because blurr vision is listed as one of the side effects.

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Hi Lifam,

There are two possibilities:

a) Blurred vision is also a common symptom of the MPNs, along with 'floaters' (speckles of white light) intermittently moving horizontally across the visual field.

b) It is a listed side-effect of MPN treatments. When visual symptoms are caused by MPNs themselves and also by the treatment, we just can't win!

If you feel your Hydroxyurea is contributing to your blurred vision then it may be advisable to have a new eyesight test to see if you require new glasses each time your dose is altered. Remember to wait 4-6 weeks as it takes this long for your body to adjust to any new dose of medication. I am sorry about your cataract and hope it can be treated soon. With such a rapid deterioration it may be worth asking your G.P. if he/she could write to the hospital making you a priority case for the operation/ laser treatment.

Good luck and best wishes,

Purr-cat

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Thanks so much, I totally agree with you said and suggested. I have mentioned to my GP, also had two eye tests the past 2 weeks, waiting for assessment so my GP can refer to hospital for me. Only thing is I don't have private health cover and public hospital waiting lists are extremely long. However I've trying every way I could to speed it up. May have to change lenses first and see what'll happen. Privately done will cost $2,500 an eye and I just couldn't afford it. Thanks.

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