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Vertigo / dizziness and ET

I’ve recently been diagnosed with ET (triple negative on the gene mutations). I’ve been suffering from fatigue and an almost permanent dizzy sensation,that is similar to vertigo symptoms.

I’ve been told by my haematology team that the dizziness is not related and have been sent to a neurologist, who’s treating it as a type of migraine known as vestibular migraine. The medication he’s given me makes no difference and on my last visit the neurologist suggested the dizziness/migraine could be related to the ET.

So my question is, does anyone else experience dizziness / vertigo with ET?

My platelet levels aren’t that high – normally in 670 to 710 region.

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Hi TJER78

Yes - for me it was one of the more scary symptoms (along with numbness + pins and needles) that had me pinging my way through various hospital depts - I would have a sickening sensation of vertigo and would get skewed vision (showing my age here, but was like the old TVs losing horizontal hold)!

It was actually the neurologist who said it was probable ET, and from there was confirmed (with JAK2+)

My platelets were in the upper 700s - you do not say how long you have been starting any treatment but my symptoms stopped as soon as I started on aspirin (which did astonish me) - I am also now on hydroxy and I have had no vision ‘episodes’ since.

Cannot say if your problems are ET related, but think mine probably were.

Hope things improve for you

Anne-Marie.

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Lightheadedness ( vertigo ) was my main symptom that started when I was 17 years old. Headaches, pain in feet, hands and hips and burning sensation in veins came on top of it. During 25 years they told me it was stress .... I moved to France and was diagnosed with ET Calr mutation. Acquired Von Willebrand with a huge bleeding risk. Lived many many years with platelets above 1.2 million without knowing it. Some Doc’s are worthless ... but I am still here. Using Pegasys and feeling much better know.

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Yes it is certainly a symptom many of us will be familiar with. I was like it for a long time before diagnosis and a particular bad incidence of losing balance led me to GP and bloods showing very high platelets and of to hospital fortunately I had both a good GP and a MPN specialist straight away so got a quick diagnosis then (ET triple neg) . Once I was on HU and aspirin the vision problems stopped but that dizzy type feeling can be there on and off over the years and you begin to find the bits that trigger it and how to manage it - as many of us will say on here do do do drink water all day, keep a little bottle with you to keep ahead of any thirst and many of "long timers" will confirm that makes all the difference with this and many symptoms. The reasons for the water are probably quite long and detailed, but the biggest thing we will all say is that experience shows it works! The balance issues can be part of the fatigue we deal with too so as time goes on you will find you manage it and the triggers and how to work around those. As with all these things keep mentioning it to your consultant if you feel it is beyond what I have said, so that a check can be made that it is not anything else - but if your specialist is not too specialised with MPNs it can be an idea to get a change of hospital! All the best.

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Hi Tjer78

I am a clinical nutritionist and specialise Jak conditions. Vertigo can certainly be a symptom of uncontrolled upregulated Jak pathways. This is because Jak2 rapidly removes glutamate from the nerve synapse essentially creating decreased nerve conduction and ultimately symptoms of vertigo.

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Wow this makes sense. Can I pm you?

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Yes you sure can. I look forward to hearing from you.

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Hi,

Can you tell us all where to look for advice on nutrition for people with jak + mpn's. I have not heard before that nutrition plays a major role in these diseases.

I am jak + and also have bouts of dizziness and headaches and some loss of balance as many on this site do, would be helpful if we knew what to avoid and what was acceptable.

Thanks and best to you.

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Hi Meatloaf9

I am to my knowledge the only functional nutritional medicine practitioner that specialises in Jak conditions as far as I am aware.

My daughter and I have multiple jak2 mutations so I went to on to study a bachelor of dietetic and nutritional medicine and genetics to reverse my debilitating symptoms.

Nutrition and biochemistry are major drivers to these conditions. Jak2 is essentially an inflammatory cytokine, driven by many biological factors, with this being said there are many many ways your can downregulate gene expression.

All animal products for example increase interleukin 6 which stimulates jak2 production.

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Very interesting. I always look at my bloods to see if I can do something nutritionally to help my ET. Your knowledge could help a lot of MPn sufferers. Are you in the UK?

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Hi Wyebird

I am based in Australia but consult internationally.

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It really annoys me when doctors dismiss symptoms as unrelated, there NOT !

I get exactly the same thing daily and still they tell me " oh no, its not the ET " well it is !

They haven't got it we have and we know that the dizziness and fatigue are real. You're not going mad its the same for us all.

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Yes!!! Im.on interferon which is having a good effect on my blood counts et +

But i still get dizzy and really bad prolonged headaches which go as quickly as they arrive.... fstigue can be bad. Just take it easy on the bad days x

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Hi - I have been recently diagnosed - JAK2V617F positive . I have had years of unexplained vertigo and fatigue. I attributed it to my autoimmune thyroid disorder however it makes more sense that it is related to the MPN as well.

Staying hydrated is important and resting when your body gives you the signal to stop - something I still struggle with!

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Yes Pamela, fatigue is my biggest problem. Stopping and resting is the 2nd. That’s when I get low. I then have to fight the low mood by forcing myself to the gym.

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Like all the other beautiful people, I agree, yes definately a sympton of ET. I too had horrendous headaches and dizziness prior to being diagnosed It was a very challenging time for me , I thought I would never get better. However after being prescribed aspirin and hydroxycarbamide , I soon felt well again. Unfortunately the latter has not agreed with me so at this moment in time I am awaiting to see the consultant for a different med.

I hope you can resolve it and soon feel better.

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Hi TJER78

I was diagnosed with ET Jak2 positive a year ago after continually going to my GP with dizziness she sent me to the balance clinic at my local hospital they said I had vertigo did all the movements sent me home it was slightly better for couple of days then it started again then I was diagnosed with ET.and dizzy spells got worse and hospital said it was not connected to ET. I was out in town for lunch a couple of months ago with friends took really ill the room was spinning I couldn't stand up an ambulance was called to take me to hospital and they said it was a bad episode of vertigo and sent me home they still said it had no connection to ET. after that I needed new glasses and decided I would go to a private optician he gave me a great eye test he said my eyes were not working in unison he would put a prisem in one lense to balance my eyes up what a difference a lot of the dizziness has gone I still believe it is all connected with our chronic illness and GP's should have more information about this illness as apparently my platelets were high at least for over 1year before they told me about it and sent to the hospital I would advise you to have an eye test just in case wont do any harm because no one will convince me these things are not connected.Best wishes Violet x

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I have ET, Jak2+, plus Mastocytosis. I have had a problem with dizziness and passed out on one occassion, needing an ambulance. Nothing found from a range of tests, but stress certainly seems to make dizziness worse. We wondered if there was also some sort of allergic reaction, linked to the Masocytosis, but this has never been proven. Too many people seem to have this side effect for there not to be a link.

Good luck, take care

Stephen

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My platelets were only in the 500's but I suffered regular dizzy spells throughout every day. These subsided considerably after taking aspirin and drinking more water. I have ET JAK2+

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Thanks to everyone who replied to this post. Really great to hear what you all had to say and to realise there are lots of other people experiencing similar things. I saw my haematologist today and asked a lot more questions about the link between dizziness and ET than I would have done without all the info everyone on here had provided me with. So thank you.

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