ET with constant silent migrain symptoms

[mustabshra]

hello, I am really.looking forward to those who have ET and struggling with lightheadedness and dizziness..I am on 100mg aspirin a day, no other medication as I am considered low.risk..From the moment I wake up I start feeling my head heavy and kind of visual aura symptoms..no headache though.In evening this becomes worst even. I take my aspirin in afternoon with lunch, but that seems not helping.Anybody plz give insight how to deal with this.I dont have any other symptoms and reallt dont want to be on cytoreduction treatment as for as I can manage my symptoms.

[Ebot]

Hi. I’ve suffered from migraines on and off since I was a child. As i’ve got older they’ve tended towards aura only, no headache, nausea etc. There have been periods where they have become intense - an episode every other day, two episodes in one day etc. Usually these have co-incided with periods of stress. And at one intense point in recent years I was alarmed that they were related to the ET / PV. A neurologist put me on propranalol (which I have taken on and off for years) and Vitamin B2. Stress really seems to make a difference.

First off, check with your haematologist that your bloods are OK particularly in respect of iron levels. Iron deficiency / anaemia can make you feel lightheaded and dizzy. And I would definitely check your water intake. Dehydration - and hunger - can make a huge difference. And there are some days where even a slight delay / distraction from a meal really has an impact. So maybe try upping your water intake, ensuring regular food / snacks and trying to de stress (mindfulness, exercise etc). Hope it resolves itself.

P.S. i’m on 75mg of aspirin which is the standard prophylactic dose. 100mg seems high.

[mustabshra in reply to Ebot]

hi Ebot, really thanks for such a detailed response. my iron levels are already checked, normal.my visual aura symproms seems constants that is something bothering me really. as it.is affecting my quality of life. May I ask are you on any cytoreduction therapy？if yes if it helped to relieve the symptoms of this silent.migrains？..thanks again

[Ebot in reply to mustabshra]

Hi. Not on anything other than aspirin and venesections (initially diagnosed with ET, a few years later diagnosis changed to PV). I’m trying to keep off the drugs for as long as I possibly can!!

I certainly have had days when my head feels really heavy - like someone is sitting on it and sometimes I can feel really spacey. Sometimes that seems to be related to the need for venesections - or post venesection in the early days. Or it may be related to the fact I’m iron deficient. Who knows?! Am learning to go with the flow. Trying to de-stress. Striving for serenity etc etc!!

Maybe it’s worth getting your eyes checked out. If your bloods and your blood pressure are all fine perhaps the constant ‘aura’ you are experiencing is completely unrelated.

There have definitely been times when certain symptoms are more pronounced and then they seem to subside. I think that is a familiar story here. MPNs appear to be predictable only in their unpredictability. Keep us posted.

[Kelly2 in reply to mustabshra]

Hello have you visited an ophthalmologist? Maybe a visit wouldn’t hurt.

[Tinkerbell13]

Hi there...definitely agree with taking extra water...had similar dizziness and bad headaches, with just the aspirin, like you, but things got better when regularly started drinking at least 2 litres a day. Sound as if am a bit of a Turmeric freak - but actually recommend that too! (need to take a good organic one which includes black pepper and I take 600 mg. per day). Best regards, hope things improve for you, Tinkerbell (ET Jak+)

[katiewalsh]

Hi. I’m responding only to let you know that many have found that their problems improved once they began hydroxyurea so don’t panic if your doctor recommends that in the future. I get migraines & tension headaches but have had them for 30 or more years so they’re unrelated to my ET. Good luck, I hope you find a solution. Katie

[stillkicking]

Hi, Sorry to read that you are being troubled with silent migraines and light headedness. I also have ET and I had frequent silent migraines, headaches and occasional giddy spells and a sort of "brain fog" prior to diagnosis. After starting 100mg daily aspirin all these things went away, however I still am troubled by fatigue. I read somewhere that taking aspirin at night is more effective than in the morning, and I think that has been true for me. I see that you take aspirin at lunch time, and I wondered if you might try taking it last thing at night (with a little food to help protect your stomach). I also note that Ebot and Tinkerbell mention drinking plenty of water and this is definitely a very good thing to do.

I do hope that things improve for you,

Kind Thoughts, Peter

[mustabshra in reply to stillkicking]

Thanks stillkicking , your response is really assuring n helpful..I am I also jak and calr negative, diagnosed one month b4..first time my platelets were picked were 1052 by next week 1522, so haemo..put me on anagrelide..but side efects... Cud not continue, although in three weeks on anagrelide counts went to 675...now only on aspirin as I sm 34 years and according to dr. Am asymptomatic...but am not acrually, my migrains and left eye visual disturbance are really bad..Are u taking any cytorefucrion drug now?

[stillkicking in reply to mustabshra]

You have certainly been going through a most difficult time and I do so hope that life and health improves for you. I am still only on aspirin. My platelets got just over 1100 and I was about to start HU (and even have the pills here to take) but my platelet count started to drop a little on their own and even got down to 975 for 2 months. They have started to increase again 1067 last month and a test due next week, so we will have to see if that jumps further. My first haematologist did not seem to accept that my fatigue and visual migraines were caused by ET and said most people have no symptoms. I eventually got very upset with her, because I knew she was wrong, and I was worried about her treating me if she did not take seriously the troubling symptoms that I had. With the help of my local GP, I have been transferred to another haematologist who seems more knowledgeable about ET and understanding. It is very hard when your specialist does not understand, it can feel like you are not believed.

Very kind thoughts to you from far away New Zealand! I am sure that all of us on this forum are hoping for the very best for you. Peter

[mustabshra in reply to stillkicking]

Thanks peter for your kind words.Hoping for u as well the best of everything..plz keep updated about how Ur visit to haemotologist went..take care

[mustabshra]

Thanks everyone for all your advice and support..Yes I am going to visit an ophthamologist next week to rule out anything wrong with my eyes and to endocrinologist as I am also on levothyroxine after complete thyroiectomy, to check my thyroids level also..I definitly agree that drinking water makes things feel better and also excercisr.plus As I am indian so turmeric is already in my diet.But now I am trying to take turmeric and ginger tea daily, not overdoing it bcz already taking aspirin and my counts were above milloion initially, so could pose risk of bleeding. Today I am also gona take my aspirin at bedtime..thanks really to all you wonderful and amazingly helpful people.I get all the support and preciuos advice here.Will update how I will be feeling after few days..finger crossed for improvement in my symptoms and platelets counts.