I have ET treated with 500 mg hydroxycarbamide daily. I am also taking the blood thinner - rivaroxaban - as I have had previous clots - and buprenorphine hydrochloride. I have just started on a small dose of Irbesartan for raised blood pressure.
I am 81 years of age and since I was in my sixties I have suffered migraine with aura and more recently I am unable to speak coherently during one of these attacks. I was treated for many years on low dose aspirin for migraine attacks and then I was diagnosed just over two years ago with ET.
Unfortunately when I stop low dose aspirin I develop migraine and my MPN specialist said I could take low dose aspirin (obviously at my risk) and she suggested three times per week which I have been doing.
My MPN specialist saw me a week ago and said all my blood levels were find although I noted that as she was reading them out she said my platelets were over 400,000 - I am not sure of the level. She did not draw attention to this at all. However, they have always been on the 300,000 mark.
Yesterday I had an extremely bad migraine and could not speak properly for several hours which was quite frightening. I am wondering if the raise in platelets is responsible for this migraine. I used to get them every four or five months and now get them every month.
I do not know if I should raised the aspirin slightly - perhaps every other day. I am going to try to contact the MPN specialist to ask what she thinks. I do not want to have to increase HU as I am already extremely fatigued by this but obviously if it is necessary I shall do so.
Perhaps any of you who suffer similarly could help me and I know Hunter has helped me in the past in my deciding to take Aspirin. With grateful thanks
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Jelbea
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I have 79 and ET JAK2 and have been taking 500 mg HU at different time ranges….daily, every other day, and now Monday/We’d/Fri. My problem has been headaches with HU. This 3 day a week is better headache wise. Right now my platelets are 509 and my goal is 450 or less. I am on a blood thinner for AFib.
My doctor gave me Sumatriptan 100 mg for migraines. Have you been evaluated by a neurologist for migraines?
Thank you so much for your response. The headaches I get are full blown migraine attacks with aura and speech difficulty. I do not know if it may be a slight rise in platelets which are causing these to happen more frequently but they are very scary. It lasted all day yesterday and I feel very shaky to-day. I was given Sumatriptan a few years ago but then told not to take them any more. There is a three year wait for neurologists here in Northern Ireland so there is not even any point in asking for an appointment.
I do hope your platelets level off very soon. Good Wishes
Just saw your note about trouble accessing a neurologist where you are. That reinforces the idea that you should go straight to the ER is you have another event where speech is impacted. While you are likely right that this is a migraine, it is not safe to assume that it is. This could be a more serious neurological event. In addition, repeated migraines may cause neurological issues. This is not something to just endure. It definitely is appropriate to go to the Emergency Room as this is such an urgent medical issue.
Thank you for all the help Hunter. I have tried to get in touch with MPN specialist this morning but unfortunately she is on leave. I have also contacted my GP to see if I can access some treatment for these brutal headaches if they occur again. I looked up some of the things you mentioned and I do not believe they are available in UK (Northern Ireland). I do really believe that the increase in my platelets may be at the source of the trouble. The headaches have been more frequent recently with no apparent cause. When I was diagnosed in London with migraine with aura I was in my 60s. I was told that platelets were "clumping " in a certain part of the brain and causing the pain. I was treated for very many years with low dose aspirin which kept the attacks to one or two a year. In the last seven years or so I have been having difficulty with speech during an attack so I usually shut myself away and do not try to speak for a while, but this time the intensity of the pain was severe.
As regards going to Emergency Room there is probably not much point. When I got my first covid vaccine (AstraZeneca) I developed the extremely severe headache which was described when people were developing brain clots. I spent 3 hours parked at ER in the ambulance and then another 2 hours on a trolley before I got examined and that was when they thought I was developing a stroke!! If anything things have got even worse and waiting times are longer again - probably 6 or 7 hours.
I have been successful in contacting the hospital to-day and was sent to my GP to get another complete blood profile, even though the last one was just one week ago. It was thought it might be due to the rising platelets although they are still "normal" for most. They will contact me to-morrow to see if any change in HU is required.
Again many thanks for your detailed and concerned response. It is good to have friends!
Sorry to hear about the troubles you are having accessing healthcare. It is important to persist in the face of access challenges. The type of headaches and loss of speech you are describing requires prompt attention. To leave a potential stroke patient waiting that long in the ER is unconscionable. When I last went to the ER with a heart issue, they had me in the ER room with an IV inserted and being monitored inside of three minutes.
Assertive patients receive higher quality care. Passive patients do not. It sounds like it is time to be very assertive.
Our friend ainslie made some good points. We each need individualized targets for treating MPNs. It is usually not the absolute number of platelets that matter at the levels you are describing. However, usually does not equal always. There may be other factors at play as well. MPNs can also increase inflammatory cytokines, which certainly could be playing a role. There can be alteration n how the blood cells interact with the vascular endothelium that is independent of platelet numbers. This can also be an issue. Thrombosis can still occur even when platelets have been reduced.
It sounds like you have some things working in your favor. HU tends to make the blood more "slippery" in addition to reducing PLTs. The aspirin is specifically an antiplatelet medication (more slippery blood). Note that ainslie is correct that aspirin as a very short half-life. Some people do find better efficacy when taking it 2x/day. It might be worth considering using the chewable form of aspirin, cutting it in half and taking 1/2 tab 2x/day. This would be a change in timing but not of dose. That would be something to discuss with your MPN care team if you are interested in exploring the option. Perhaps your hematologist has someone covering for her with whom you could consult.
I would be surprised in there are no CGRP inhibitors available where you are. These are standard medications used to treat migraines. I believe that these four CGRP inhibitors are approved by NICE and available in Northern Ireland. eptinezumab, erenumab, fremanezumab and galcanezumab.
Here is a longer list of CGRP inhibitors if you want to explore some more.
Nurtec ODT (rimegepant). Nurtec ODT is indicated for the treatment and prevention of migraines.
Qulipta (atogepant). Qulipta is indicated to treat migraines.
Ubrelvy (ubrogepant). Ubrelvy is indicated for the acute treatment of migraine with or without aura.
Vyepti (eptinezumab). Vyepti is indicated to prevent migraines.
Emgality (galcanezumab). Emgality is indicated to prevent migraines and treat episodic cluster headaches.
Ajovy (fremanezumab). Ajovy is indicated for the preventive treatment of migraines.
Aimovig (erenumab). Aimovig is indicated to prevent migraines.
I have no way to know whether these meds are an appropriate consideration. There are also other types of medications used to treat migraines such as the triptans (e.g., Sumatriptan, Zolmitriptan, Frovatriptan, Eletriptan, Naratriptan).
While I do not know which of your treatment options is best for you, I am quite certain that you need and deserve prompt attention to this issue.
Thank you for responding Elizka. I am so glad you have found help with the CGRPs. Unfortunately as I was telling Hunter these would probably not be good for me as I suffer a severe form of restless legs syndrome treated with opioids at present and these CGRPs can trigger this horrible condition. I shall talk to my doctor next week and perhaps he can come up with something to at least ease the pain of another attack. Good wishes to you
Hello again Hunter and thank you for the very comprehensive list of medicaments which you have supplied. I know straight away that CGRP inhibitors would probably not be useful as I suffer from severe restless legs syndrome which is at present treated with buprenorphine hydrochloride and unfortunately CGRPs are reported to make this condition even more unbearable. However, I shall discuss my options with by GP when he returns from leave next week and see what we can come up with. If I just had something to shorten the attack and ease the pain I would be very glad.
Again a big thank you for all your assistance which is much appreciated
Sorry to hear about the uptick in migraines. Glad to hear that the aspirin has helped.
Increasing the aspirin along with taking rivaroxaban might help but would come with an increased risk of hemorrhage. The benefits might be worth the risk, but i would be cautious. This would be something to discuss with your hematologist. You could also discuss the uptick in platelet levels as well. Note that the absolute number of platelets does not correlate with thrombosis or other symptoms at the levels you are experiencing. That may be why the hematologist did not make a big deal about it.
I have also experienced a different type of migraine as a result of the brain surgery I had several years ago. I have had success using a new class of migraine medication called CGRP inhibitors. These medications come in two forms, monthly injection and daily/episodic oral. The monthly injections prevent the migraines from occurring, The oral can do the same or be used to stop episodic migraines. I use Ubrelvy to deal with the occasional migraines I experience. I have never had a migraine last longer than 1 hour. Usually they are gone sooner. If you are interested, you could consult with a migraine specialist regarding your options to prevent the migraines. Note that it is unlikely that your hematologist would be aware of all of your options for migraine prophylaxis.
A Mirror368 notes, HU can cause headaches. It is possible that this may be contributing. Sometimes timing is the only clue to what is causing the headaches, since they may have nothing to do with the medication.
Suggest that you consult with a neurologist/migraine specialist and have this doc collaborate with your hematologist. The level of migraine symptom you describe in concerning. This should be treated as an emergent condition. If you have another episode like this, suggest you have someone transport you to to the ER for an evaluation while having the episode. This would speed up the diagnostic process and rule out other potential issues.
Hi Phil, Thank you for your reply. I take hydroxy 500 mg daily and Rivaroxaban after I had clots. I have also just been started on Irbesartan 75 mg daily for borderline blood pressure. I take low dose aspirin three days a week because of the migraines. I know this is an added risk for a bleeding episode but if I stop the aspirin altogether I get a migraine within one week of stopping when all the aspirin is out of the system. My MPN specialist thought it might be better to keep on the aspirin even it is at my own risk.
A previous GP started me on sumatriptan four years ago but almost immediately stopped it again and said I should not take it. I never found out why. I was put on propranolol a couple of years ago and my nervous system became really fired up in four days with very slow pulse and I had to go to A&E where they stopped it. My hair then started to fall out and I lost about a third of it. It took it 18 months to grow back.
I hope you find the Sumatriptan of help. My GP is off for a few days but when he returns I shall see if I can get some pain relief. I can put up with a lot but that last headache was something else! Again many thanks and good wishes
you have good info already from other posters , if it is affecting your speech I would also advise action ie discuss urgently with your MPN specialist at the minimum. One thing I would add is that some patients can be symptomatic at platelets at 400, I know one ET patient who needs to keep hers down around 300 to be symptom free. So lowering platelets a bit might help, one to discuss with your specialist. The other thing that comes to mind , this is not advice but again something to discuss with specialists is that how you are dosing the aspirin. My understanding of aspirin low dose ie 75 or 100mg is that even if you take it once a day it doesn’t quite “last” the 24 hours so some docs suggest splitting it 1/2 in morning and 1/2. 12 hours later. Of course some take more ie one in morning and one night but although you don’t say what dose your taking I understand you have to be careful. I wonder if you are taking it say Monday/we’d/Friday it is losing effectiveness on the other days and whether it’s worth discussing with your specialist about taking a lower daily dose as opposed to MWF. Of course don’t do that without doc okaying it.
It will be interesting to hear what the doc/docs say.
Hi Ainslie, Thank you for all your advice. I was very interested to hear about the platelet level. I do think I am very sensitive to this. About 20 years ago I was diagnosed with migraine with aura and put on low dose aspirin daily. This meant that I was only having attacks about twice a year and I was told at that time my platelets were "clumping" and causing the migraine. I did not have raised platelets back then but was told they were "sticky". I do wonder if this was the start of the ET.
I find it very interesting about the aspirin and I shall make some more enquiries from my Macmillan nurse about this. I have to be very careful how much I take because it is an added risk as I also take a blood thinner.
However my MPN specialist had suggested that I take them M/W/F to see how I got on. I had been taking one every day before that. I was, of course, told that it was at my risk. I have had my blood checked again to-day and hospital are to let me know if I need to change anything in my treatment.
I have ET JAK2. My hematologist said I did not need to take low dose aspirin since I was already on a blood thinner. I wonder if anyone else is taking aspirin and blood thinner together.
I also have ET Jak2. I take hydroxycarbamide 500 mg daily and also take rivaroxaban (blood thinner) daily as well as opioids for severe restless leg syndrome and just started antihypertensive. The reason I take aspirin as well is because if I do not take aspirin the migraines get much more frequent. It is something to do with how aspirin affects my platelets. About a week after stopping aspirin I will have a migraine as that is how long it takes for aspirin to completely clear the system. For about 15 years or so I was treated with daily aspirin to prevent migraine and went down from daily headaches to 1 or 2 per year. I was prescribed this by one of the London Hospital migraine clinics. They told me my platelets were "clumping and sticky". I was only diagnosed with ET just over two years ago but I suspect it had been working on me.
I have talked to my MPN specialist and she thought it might be worth the extra risk of a bleed to keep the severe migraine at bay. The decision had to be mine and I do not like it but neither do I like my speech being confused for hours on end and the severe pain. She told me to try the three aspirin a week but to-day I was telephoned after the blood results had come through and told I should increase to every other day dosage to see if this helps.
I have seen where others are on both blood thinner and aspirin for certain medical conditions.
Thanks once again for taking an interest and good wishes to you
As always, there is already tons of great advice & guidance already.
I am always interested in those that have ET & have (or continue to suffer) aura migraines. From my mid 40s I started to suffer with severe aura migraine’s and also suffered 2 tias. The aura migraines were awful and had some bizarre effects including affecting my sight & sometimes speech during or after an attack.
I was diagnosed with ET some 3 + years ago and put on interferon. A most interesting result is that post diagnosis & treatment I have suffered less than a handful of milder aura migraines. With that in mind I find it really hard to believe that the 2 aren’t connected in some way.
That said there is still so little known about the cause(s) of aura migraines & they can be responsible for all sorts of very odd & sometimes scary symptoms.
I sincerely hope that you sort out a solution as they really are extremely debilitating.
Thank you for your information. I really agree with you that there must be a connection between platelets and migraine headaches with aura. Certainly 20 years ago when I first got migraine about 60 years I was put on daily aspirin as I was told my platelets were "sticky and clumping". This kept me well for a long time with only one or two headaches per year and no severe pain. This was long before ET was diagnosed which was just over two years ago but my GP knew my platelets were raised for some time and did nothing about it! I do hope you have continued relief from frequent migraine and your ET treatment goes really well for you.
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