Blurry eyes

[Dazakella2010]

Hi all.... has anyone experienced blurry eyes with E/T? At random times my eyes feel like they go blurry and I have to rub them or close my eyes.

[clubdino]

Yes. About 6 months ago I was struggling with blurry eyes on a regular basis. Rubbing my eyes or closing them did not make it better. It would last for probably 20-30 minutes. It stopped happening thankfully. I always popped an extra aspirin when it happened just in case it was small clots in the vessels of the eyes.

[ccsial in reply to clubdino]

I've had that problem for a long time. My eye Doc says have dry eyes but I suspect it has to do with ET and/of Hydrea. My skin has dried out too. I use eye drops frequently but it does not seem to be helping as much as it used to.

[clubdino in reply to ccsial]

At first it was happening when I would watch TV or be looking at my cell phone and I thought maybe it was happening because I'm starting to get older. But the fact that it went away on its on makes me know that wasn't it. It would be so blurry that I couldn't read.

I had a similiar episdode where my vision was semi-blurred and it stayed like that for months. I could still read that time but I was scared my vision would remain like that forever. I saw an eye doctor that time and they didn't find anything.

[Cookiebaker in reply to clubdino]

I have had blurry vision too . I can read just fine ... the blurring is when I try to read words on the TV or road signs . I went to eye doctor and he said it was dry eyes but I think it is related to the ET. I had blurred vision before I started taking HU. If anyone has ideas for improving my vision please give suggestions. I use eye drops but it doesn’t seem to help.

[clubdino in reply to Cookiebaker]

I agree it's the ET because I'm not on any treatment. I don't feel like I have dry eyes so I don't think it's that either.

[clubdino in reply to Cookiebaker]

Here is a paper in regards to ET and blurry vision. It says to take aspirin.

ncbi.nlm.nih.gov/m/pubmed/9...

[stillkicking in reply to clubdino]

Thanks for the link to the paper, the abstract was very interesting and I do so wish that the many haematologists out there who seem in permanent denial that there can be symptoms that result from having high platelet numbers would read it and take note!

[clubdino in reply to stillkicking]

Agreed. It can really bring you down when the doctors act like everything is in your head.

[Dazakella2010 in reply to clubdino]

I know..... they make me feel like I’m making it all up! No care at all!

[Mazcd Partner MPNVoice in reply to clubdino]

Please note that you should only take aspirin if your haematologist or GP advises you to.

sorry this reply was supposed to be under the reply from clubdino regarding aspirin.

[Melaniem59 in reply to clubdino]

That’s a brilliant article, explains a lot, Thankyou!

[Anag in reply to ccsial]

I have had the same problem with my eyes. Blurriness was usually attached to dryness but also something else. ET was also a cause for my low pressure Glaucoma. There just wasn’t enough oxygen going to the eye capillaries. I was also prescribed eye drops. Since being on my AutoImmune Paleo diet, the dryness has gotten much better. I rarely need drops. Dry eyes are often a result of allergies (yes, also from food) and dry nasal passages. But, the eyesight has weakened since starting Anagrelid.

[socrates_8]

Hey Dazakella2010...

My name is Steven. I was originally diagnosed w/ ET, and now Post ET/MF.

However, I have also had x 2 TIAs (minor brain strokes), and I do not wish to alarm you at all... but... vision issues were something I have notably suffered from when my platelets were too high, and which resulted in a TIA.

Hence, how high are your platelets at the moment?

However, fatigue alone can also be just as diabolical too...

Fatigue stopped me studying as I could not concentrate like I once could. My eyes were always helping me into slumber almost every time I looked my laptop etc...

But just to be sure... check w/ your specialist & GP that your platelets aren't too high... circa over the 1M mark etc.

Best wishes

Steven

(Sydney)

[SuET2017]

Yes I do all the time, it’s a symptom of ET, for me a more prominent one. I have been told it’s when the platelets are ‘rushing’ The system which effects the blood vessels in the eyes.

[stillkicking]

Hi Dazakella,

How frustrating for you. Are you still also having the headaches that you have suffered for such a long while?

[Dazakella2010 in reply to stillkicking]

Hello

The blurry eyes don’t seem to be much of a problem at the moment.... I just rub them a couple of times and they seem to go.... yes I still have my headache..... lost count how many weeks now but it’s been since 14th February.

[stillkicking]

So sorry to read that the headache continues, that must be beyond frustrating! Good that the blurry eyes are not all the time though.

Kind Thoughts,

Peter

[Dazakella2010 in reply to stillkicking]

My Macmillan nurse has been so unhelpful! I told her about my symptoms and she told me that basically it was nothing to do with the E/T and to go and see my gp.... and to be patient and wait for my st Thomas’s/guys hospital appointment to come through.

[Bazzak in reply to Dazakella2010]

I suffered from blurred vision and dizzy spells, as you say lasting 20/30 minutes before I was diagnosed with ET, since taking aspirin and hydroxy they have stopped. l am under Chelsea and Westminster and find them very good, down to going every three months now,. Keep strong, sure you will feel better soon.

All the best

Barry

[stillkicking in reply to Dazakella2010]

Hi Dazakella,

It is really awful being passed from one doctor or speciality to another, a bit like "pass the parcel", and feeling stuck in the middle somewhere with no one seeming to want to listen or do anything, and having had a few battles myself over the last few years I really feel for you with this.

I see in a previous post of yours that you have had a CT scan done and that was clear. I'm not in the UK so don't know how the system works, but does the CT scan mean you have seen a neurologist, or were you referred for the scan by your GP? Whilst you may very well be correct that the ET is causing the headache, it does sound quite unusual in that it has been for such a long duration without let up. I suspect that many of us with ET will have had horrible migraine like headaches for a few hours or even a few days, but so many weeks or months?? Whilst waiting for your St Thomas/Guys hospital appointment to come through which I imagine may take some time, it would be very good to investigate all other possibilities, even if the ET seems the most likely cause. If you haven't already seen one, please try to see a neurologist.

[Dazakella2010 in reply to stillkicking]

My appointment already come... it was really quick... I have an appointment next Tuesday.... 28th May

[stillkicking in reply to Dazakella2010]

That's very good news, delighted to hear that it will be so soon

[Dazakella2010 in reply to stillkicking]

Thank you that’s so kind.... I just hope there is something they can do x

[Searcher56]

Do you wear glasses? I used to get my specs from a high street chain store optician and I used to suffer from light sensitivity. But then I thought I will try a local independent optician and the glasses I got from him have been fantastic, expensive mind you but no more light sensitivity and I have no tints on my glasses. Presently I feel there is always some rubbish in my eyes, this could be pollen.

[mhos61]

I haven’t experienced blurred vision, but I used to get occasional scintillating scotoma attacks prior to ET diagnosis. I just thought it was an age thing.

I have been on aspirin and hydrea for three years now and have only had one attack in the early days of treatment. I’m convinced it’s the aspirin that has helped me. I wonder if one aspirin a day isn’t enough to combat these symptoms in some MPN patients. Dr Barbui, Professor of Harmatology in Bergamo, Italy has a clinical trial looking into two aspirin daily verses one aspirin daily, results in three years! I wouldn’t condone anyone increasing their aspirin without seeking medical advice.

[stillkicking in reply to mhos61]

Hi Mary,

Aspirin also was a great help to me too, I used to get scintillating scotoma attacks prior to diagnosis of ET and going onto aspirin, and the aspirin cleared them up almost immediately.

[MCW22]

I have PV and have suffered with intermittent blurriness since before diagnoses , worse after using computer. sometimes unable to read.

[Peter18]

I've been on aspirin and Hydroxy since March 2018 (for PV & ET). I have occasionally suffered from slight but noticeable blurriness in my vision, often in one eye more than another. I went to my opticians and he prescribed a slight upgrade of one lens in my reading glasses. Things seem to have improved (DG): but is this because of the new specs, the lowering of platelet counts, drinking more water, monitoring of screen/reading time, long, daily walks outdoors allowing the eyes to relax...? Who knows!

Very kindest regards, Peter

[Yorkstyke]

I had lots of problems with my vision before I was diagnosed. Temporary blindness in one eye, double vision, difficulty focussing. Since I went on Aspirin and the Hydroxy, it has improved. Headaches and fatigue are still a major problem. Hope this helps.

[Mycancerconcern1]

Hi Dazakella. I had the same blurry eyes on a regular basis then had a mini stroke were I went completely blind in one eye for around 20 minutes. That is when they found out I had ET after the stroke

[Dazakella2010]

Thank you very much for all your comments, they have all helped so much. X

[JackLina]

Yes. I believe it is due to the drug but I had this beforehand. Maybe it was because I was extra terrestrial! I have had symptoms of the condition for many years prior to being diagnosed, so perhaps that is the case.

I am presently visiting a consultant abou this and other eye issues. He seems to consider the same reason. ATB.

[Superwoman]

Yep I have suffered with blurry eyes since starting Hydroxycarbamide six years ago also take aspirin. At the London forum last year I did ask the question did anyone else suffer with blurred vision, and there was a few, but none of the doctors there could give an answer as to why it happens, or if it was to do with ET, or Hydroxycarbamide.

I have been sent twice to the hospital for suspected cataracts nothing has every been found, and only this week have been referred again from the opticians to the hospital as there was narrowing of the angle ( god knows what that means) is not right and the pressure is high suggesting that I could have the start of glaucoma 🤓not funny in my view do not need any more stress, lucky for me I got a cancellation so seeing someone next month, the wait at the moment at my hospital is nine months or longer but just kept on checking their website and struck lucky. There is no family member that has ever had glaucoma, I do not get pain, or bad headaches just this blurred vision, use drops for dry eye which helps eat a good diet drink loads of water and keep fit. So know how you feel.

Jean