Headaches

[VTAR24]

I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing ok good and bad days I'm on aisprin and interferon 90 mg every second week does any one suffer from really bad headaches mainly over left eye feels very like sinus but docs are telling me it's all part of ET my platelets count at the moment is 879 it was 1149 so thankfully its coming dwn a bit am on interferon since March of this year so just wondering does anyone else get these headaches ? Tks

[Mirror368]

I have a lot of headaches with ET and taking Hydroxyurea. However, it is not across the one eye. It is across the forehead and/or head. I have read that ET can cause headaches.

Best wishes, Eileen

[dbus1417]

I posted this in another thread but it is applicable..

headaches are a common symptom of MPN. I too have CALR, but my headaches are less of an ache and more of just a feeling of pressure or fullness in my head. They are not painful but persistent and can be distracting at times.

One thing I have noticed is that when my platelets are lower 5-600 I feel that sense of fullness less than I do when they are over 700k. Not sure if that is scientific but it seems to correlate that way for me.

[VTAR24 in reply to dbus1417]

Thank you for sharing with me

[Hatchie]

I would regularly get headaches and visual disturbances with ET while on interferon. I would take the anti inflammatory naproxen every 3 days and that would stop the headaches. My platelets would range between 700-1000.

[Holidayladyteacher]

I have ET ( triple negative) I am on aspirin only and have a platelet count in the 700 to 800s. I also suffer from the headaches behind one eye and have regularly mistaken it for a sinus problem. I sometimes get flashing auras and blurred vision too. I am presently under a fatigue clinic and now understand that this are one the warnings signs for me personally to rest. I hope that this is some use as I am not on any medication and yet I still have this symptom; so I thought it might help you. Take care

[Grendall]

I initially started with the constant headaches as I went to the GP with getting my diagnosis, was sent for a CT scan etc but unbeknown to me that’s when he sent of my bloods for the genetic testing and it came back with the ‘Calr type 1’ mutation, on aspirin initially but symptoms got a lot worse, therefore after a few months was put on Interferon and have been ever since….

[kamiilos]

Hi, I was experiencing very bad headaches. Basically once I started treatment with Pegasys I felt better from day to day. My blood counts are in range now though. Hope the Interferon will bring your platelets down further.

[Amethist]

hi, I was 49 when diagnosed with ET. Along with a few other symptoms I also used to get terrible headaches that would send me to bed for a few hrs 1-2x week. Also had eye symptoms like loosing central vision. It was the severe memory issues that made me see the gp in first place. Anyway she also tested my vit D& B12, both low . I’m naturally curious about health stuff so did my own research too.

After reading about B12, I started taking methylcobalamin- high dose. The improvement was spectacular and rapid and within a month, all the symptoms I went to gp about had vanished and have not come back. I wasn’t taking anything else at the time.

My platelets then were approx 1400 on Dx. Most recent test a while back is they are the same. Other than taking a little aspirin every 3-4 days, that’s all I take.

If you haven’t had vitamins tested, maybe a good thing to have done . You never know. Always get a print out. How the medical profession treats B12 deficiency is appalling so basically you’ll need to do your own research and I highly recommend the book Can it Be B12 deficiency by Sally Pacholok. Same with vit D, but then according to my Dr daughter in law, they get a whole half a day on learning about vitamins in their 7 yrs of training.

I can’t comment on any of the medication for ET as I’ve never taken any.

Best of luck

[Tico]

I was 38 when diagnosed and i had the same problems,ie, visual disturbances and headaches especially above one eye. After starting medication cleared up, but 16 years on starting to have similar problems. I'm Et Jak 2 postive. Tico

[Exeter21]

my headaches reduced once platelets went around 450. I do have to drink plenty of water daily with interferon & if I don’t I get headache which goes with increase of fluids 👌 Julia .

[Cja1956]

Before being diagnosed with ET in 2008, I had been getting very bad headaches for several months and everything that I was taking wasn’t working. I went to my primary care at the time and he took bloodwork and my platelets were around 600. They sent me to a hematologist and that’s when they diagnosed me. I started taking hydroxy and within a couple months, my headaches went away.

[Threelions]

Hi

I used to have very bad visual migraines pre diagnosis. Once my platelets came down following interferon treatment they ceased.

Hopefully same will happen for you 🤞

[RoundTheWorld in reply to Threelions]

I was the same - migraine aura disappeared once I was on aspirin (and later clopidogrel). For me the disturbing aura were worse than most of the headaches (with a few exceptions).

[Threelions in reply to RoundTheWorld]

Agree, my vision was badly impaired during aura part of the migraine.

[Yarnhabit]

I am also prone to headaches and visual disturbances. I have always had migraines but these are slightly different but like others say it is an indication to rest. If ignored I then become very dizzy. I am 58, platelets were 907 when last checked, Haemocrit was 48. I take aspirin daily 75mg and have 4mg of a blood pressure medication to help with the pressure behind the eyes.

[Poppy6060]

Hi I have always suffered with migraines and headaches and the migraines always start behind my left eye I was told this was a symptom of PV I am on Pegasys and lately I have been getting visual migraines

I try to catch a headache early with pain killers but sometimes I wake in night with one I hope you can find something that helps has I know how horrible they are take care Poppy

[Old_Coger]

Hi I was diagnosed with CAL R mutation on 1st May this year, I am waiting for BMB results to get precises diagnosis. looking at blood test results it looks like ET.(delays in getting results due to the pesky Russians hacking the lab!)

I have a lot of headaches and I had a continual one for 6 weeks which suddenly stopped for 3 days, since that time for the last month the headaches have become intermittent and variable in severity throughout the day. Initially I thought these where brought on by exercise, (before this I have never had an exercise headache of any kind and I am 54) which I have cutdown on dramatically as it can exacerbate them, but does not appear to be the cause. I also have a lot of feelings of what I would call fuzzy headedness.

My platelet counts are in the 600 to 650 range and I am taking aspirin but nothing else.

I have found that the only over the counter medication that seems to help if the headaches get bad is Ibuprofen, but I do not like taking NASID's regularly as they are bad for your kidneys.

I have also read about low B12 possibly being a cause but none of my blood tests have been for vitamins so I don't know if this will correlate.

I also thought about using CBD oil as this is supposed to be a natural anti-inflammatory, I am assuming that it is the anti inflammatory effects of the NASID's that affect the headaches rather than the pain killing effects. Has anyone tried this? and has it worked?

I am due to get my full diagnosis and discuss my treatment plan with the MPN clinic at Guys in mid August, so I will ask about both B12 and CBD oil to find out if they have any opinion on these.

I have an appointment with my GP in a couple of weeks and they have suggested the long term use of amitriptyline 10mg as a long term solution. Has anyone else experience of this, it appears to be a very low dose of an anti depressant which can be used as a long term pain relief. Without much knowledge of this I am a little reticent to take something which if I want to come off it has to weened off.

(If you are in the UK and can get to London I would recommend getting referred to the MPN Clinic at Guy's. After one visit I feel assured that they actually know what they are doing unlike the Haematologist who I got the initial diagnosis from)

I will let you know what the MPN Clinic and GP say about B12, CBD oil and the amitriptyline 10mg as solutions to the headache issue.