I hope everyone is doing ok. I’m just gonna put this out there for advice. As some will know I have ET which is has progressed to Myelofibrosis. I have other health issues long term spinal problems & rheumatoid arthritis. Over the last few months I’m really suffering with terrible headaches which I’m aware is a side effect of ET. They are becoming troublesome& constant. I have spoken to my team & they really don’t offer much advice as to why this is happening or a solution.does anyone else suffer with ET headaches that are ongoing
Oh @JoJoflowergirl terrible headaches sound really debilitating.
I hope others might be able to share their experiences.
Can your GP help at all with any tests?
Might it be stress related at all?
Does diet help at all?
Are you drinking plenty?
Do stress their severity and impact on your quality of life.
Please keep posting how you are.
Be ever so kind to yourself
I don’t have the same blood cancer as you but have long suffered with headaches and commonly migraines.
I practice yoga breathing which helps for the milder headaches a long with plenty of sea air( living on the coast has massive benefits)
Medicinally I have been prescribed topimirate an anti epilepsy drug for many years now which has dramatically reduced my migraines and I resort to sumatriptan nasal spray when one strikes which works really quickly if it is not going away with fresh air and yoga .
Headaches are really debilitating, I do feel for you.
Be good to hear what others do
Hi there…noticed i get them more often now though not like you by the sounds of it.
This is a very good read and pretty recent.
I never used to get headaches but are quite a scary thing when in full flow.
Hello @JoJoflowergirl. Thank you for sharing your experience of headaches and for all the support you give others on this forum. I am really sorry you are suffering. I sympathise as I too suffer with migraines and know how debilitating they can be. My story is that I was diagnosed thirty years ago with ET and myelofibrosis together. At that time my platelets were very high and one of the symptoms was severe headaches. As my platelets reduced the headaches lessened but about four years ago my disease transformed to myelofibrosis without features of ET. This coincided with increasing anaemia requiring frequent transfusions of red blood cells. I find now that when I am in need of a transfusion and my Hb (haemoglobin) has dropped particularly low, that the headaches get worse. Interestingly after two of my Covid vaccinations which were Moderna I had severe prolonged headaches but with the Pfizer vaccinations I was okay. My iron level is now extremely high due to the numerous transfusions I have required and I think my high iron is contributing to my headaches also. In conclusion it is complicated! Hope this helps. Thinking of you. Willow X
I was diagnosed with ET at the begining of this year, my headaches started as a consequence of the Hydroxycarbamide medication and ended up using codene and cocodamol as paracetamol had little effect. Both codene and cocodamol have their own side effects but are less than the constant headaches and are manageable. Ask your team about different painkillers you might need to try a few till you find something that suits you. Hope you find somrthing.
Hi @Colinb I have to say that my side effects from most painkillers are constipation and generally feeling yukky.
That is just my experience though.
Take lots of care @Colinb constant headaches can really drag you down
Ha constipation seems par for the course with pain killers, i avoid codene like the plague now, cocodamol makes me squeemish but i think im building a resistance now…
Thank you all for your advice & experiences. I’m sorry I have been quiet but I’ve been dealing with family problem & had a real week of it. Hope everyone is doing ok
Hi @Leefer. Thanks for the Pub Med post. I found it very informative.
Hi @JoJoflowergirl. I have spinal problems, and had neurosurgery on my neck back in 2014, and arthritis and ET. I have suffered bad neck and headaches for many years. I am now wondering if they are related to the ET or the spinal problems. The pain killers for my neck don’t always work, so I think maybe sometimes they are ET related. Whichever it is, they are jolly debilitating, so as a fellow sufferer, I give you all my sympathy. There are no quick fixes to deal with them. Even the strongest of meds don’t always work, as you probably already know, and alternative remedies don’t work either. I find that the pain will reach it’s own peak before it will start to respond to any medication. I have tried everything to no avail.
Cheers Chris…all the best👊
Hi @Leefer. My headache has been bad this week. Just been for my monthly blood test. I hate needles, and it was just my luck to get a novice today. Boy did that hurt. It’s never been that bad before. Just when I was getting more confident about having them, she has set me back to being wary of them again.
Sorry to hear about your bloods experiences today. I always think it is interesting the differences of after bruising I get. Take care @Chris1
Hi @Erica. I’ve never been good with needles, so I have to psych myself up before going for one. It will be interesting to see if it bruises. Normally it doesn’t. I am also allergic to the sticky tape that they use, so I always have to remind them not to put it on me. On one occasion they tried to stick it on me, even after I had told them not to, as they do it automatically and she wasn’t thinking. I managed to stop her in time thankfully. How are you feeling today? Hope it’s a good one for you.
Yes …i feel like a pin cushion with all the Covid/ Flu needles as well.
Pretty used to it now…dont worrt Chris …one day at a time and sure next time round will be just fine
Make sure you are drinking plenty of fluids…people dip down in colder weather
Thanks @Leefer for the advice about drinking plenty of water. I always have a couple of glasses before going for a blood test as apparently it helps if you are well hydrated. I also take a small bottle with me to drink while I am waiting. Keeping well hydrated is important with ET, but I don’t know the science of why that is the case. Perhaps one of the nurses could enlighten us.
Its simple really Chris my Haemotology nurse told me
Our condition means the organs in our body work harder…ie my spleen is enlarged
So like fuel we need a bit more because the vital organs need to keep going.
Bit like when you need more water when drunk because the liver etc is working hard to flush the Toxins out
That is in layman’s terms
Thank you @Leefer. You are lucky that you have such a helpful nurse to explain it to you. I don’t have that luxury. I have never yet met or spoken to a cancer nurse. My only contact since diagnosis has been with the haematology doctor, and he doesn’t explain anything. All I have learnt about ET so far has been either from my own research or this forum.
Well.i have not spoken to a Cancer nurse either…i class my Haemotology Doctor as my nurse.
If you feel you want to talk about it Chris the experts on here are very good…there is a freephone number i believe to talk away from the Forum
And of course there is Macmillan who will help you if you ring them.
To be honest with you as you come to terms with the illness the best Doctor is yourself…you will know if you feel bad or if things are different.
Do we ever come to terms with illness?..i dont think so…we learn to live with it.
Sounds to me like you need a chat and i am sure the good folk on here will point you in the right direction