I’ve posted before as I’m awaiting results of tests for Essential thrombocythemia (ET)/Polycythaemia vera (PV) as I have high platelets and recently high haematocrit and haemoglobin.
I also suffer from migraines with aura and have had worsening and more frequent migraines this past week (daily) and saw the GP who sent me to hospital yesterday due to concerns over potential clots due to my high platelets. The D dimer test came back negative and I had no further tests and I’ve now been referred to a migraine specialist.
I have been told previously that there is a link between high platelets and migraines but the registrar dismissed this (later saying they didn’t actually know).
I just wanted to know if there is a definitive link between migraines and high platelets? I was sort of hopeful once I had a diagnosis and treatment to lower platelets etc that they would improve.
I’ve copied in the @BloodCancerUK_Nurses to see if they can help. Others may be able to share their experiences to.
I have lymphoma and suffer from migraines but no link. I was referred to a neurologist and now have medication for the migraines which helps. I do think that the stress of living with blood cancer - when I’m having a bad day - can trigger them.
Hello @Barry1 and thank you for sharing your story. I was diagnosed with an MPN (Myeloproliferative neoplasms) that has features of Essential thrombocythemia (ET) and myelofibrosis in 1992. The disease has transformed over recent years and is now 100% myelofibrosis with no features of Essential thrombocythemia (ET). In fact my bone marrow is now seriously under active and my platelets are low rather than high. However, in the early stages I suffered frequent migraines, often with auras. Allow the migraines haven’t completely disappeared I have found that they are less frequent and once my platelet count was lowered by taking Hydroxycarbamide I had fewer migraines. Interestingly my mother was also diagnosed with Essential thrombocythemia (ET). She had no features of Myelofibrosis and lived to the age of 92! However one of the symptoms she experienced before diagnosis was migraines with auras. She didn’t seem to get the headaches but just the auras. Again, once her platelet count was reduced she hardly ever experienced the auras. Hope this helps. It is just mine and my mother’s experience. I am not medically trained. I wish you well. I guess it must be a worrying and uncertain time for you. The pain of migraine is awful and very debilitating. I don’t think people fully understand what it is like unless they have experienced it themselves. Warm wishes Willow x
Thank you for your replies. Nice to speak to people who understand the misery of migraines (although sorry you’ve experienced it too!).
It gives me hope that there is a helpful treatment whether that is by lowering platelets or another treatment so I guess the neurology referral is useful after all. Was feeling a bit negative after being in hospital for 7 hours last night!
I think everything has probably got on top of me a bit and is contributing to the migraines. Felt better after seeing haematologist but then there is more unavoidable waiting with getting results. I have been signed off work now so that’s one less thing to worry about at least.
Thank you for your post and sorry to hear that you are going through an understandably worrying time with investigations due to high platelets and migraines.
We do hope that the neurologist is able to help with this or prescribe some pain relief while the investigations are ongoing. Could we ask if they have said if you will be having any scans of your head for your migraines?
It may be a good idea to keep a log of when these are occurring, if there is always aura associated with these and how long these are lasting, as well as the severity of these.
We would recommend keeping your GP updated about this and they may also be able to prescribe medication. If they have not already done so, they may want to check your blood pressure too.
As for high platelets and migraines, I’m unsure if there is a direct link for this, but both Essential thrombocythemia (Essential thrombocythemia (ET)) and Polycythaemia vera (Polycythaemia vera (PV)) can cause headaches, dizziness, visual changes and fatigue these can be quite severe and it is important to keep the haematology and neurology team updated with how you are feeling so that they can support you as best they can.
It sounds like you have been doing all the right things & just to make you aware that if you get a sudden change in your headache, the headache becomes very severe or you feel more unwell then please call 999 or go straight to A&E.
The referral was only made when I was in hospital last night so not sure what the plan is in terms of scans etc. My GP thought I would have a scan in hospital last night I think but that didn’t happen, just the blood test for clotting.
I do have high blood pressure already which had been under control but spiked a couple of weeks ago which may be related to the increase in migraines. I am on candersartan for that and also to prevent migraines (obviously not working!). I’m a bit limited in terms of pain relief as can’t have ibuprofen or triptans so just paracetamol and hot and cold packs.
I will start making a diary of the migraines. It did used to be that there were clear triggers but it appears to be quite random now but maybe there is something I’m missing so sounds like a good idea.
It sounds like you are doing all the right things and hopefully there will be a plan put in place so that you can get more information soon and do keep us updated on how you are doing
