ET and Left sided headache.

[azaelea]

I have ETdiagnosed last July and suffer with headache on the left side which comes and goes throughout the day for a couple of weeks or so. The pain is in the same place I always used to have my Migraine headache, which I thought I had finished with. These only lasted a couple of days however. I also have a sensation in my left eye in corner like a piece of grit in it. Do any of you good people suffer from anything similar? I am not on Hydroxy at moment but will see Haematologist on 28th when will most likely go back on it maybe helping with the headache. Would welcome the views of you good friends. Fran

[Rachelthepotter]

Have ‘t had anything similar so can’t help from my own experience but it does sound worrying , and well worth checking out with whoever is your

urgent care contact point. Sooner than the 28 th. Might be migraine, might be anything else, and a major cause of problems with MPNs is clots (or bleeding if yr platelets ate very low) .

All thr best

Rachel

[azaelea in reply to Rachelthepotter]

Thank you Rachel for your advice. I had better have it investigated sooner than 28th. These things are so worrying. Regards Fran

[Bridie123]

Hi there, I have been a migrain sufferer over the years and have found they have become more visual and pressure rather than banging pain since being on hydroxy and clopidriol. However when I have something similar to what you are describing it's because my neck is out. Posture stretches learnt from a chiropractor helps. Something to check out maybe. 🤗

[azaelea in reply to Bridie123]

Hi Bridie, yes I too have been having lots more of the Migraine Auras without the dreadful headaches. This pain is more or less in the background and I do suffer with neck and shoulder pain on left side. When I asked GP about headache around last September he said it was related to neck pain after examining the back of my eyes. I will post when I discuss with Haematologist. Thanks for your message. Regards Fran

[Tinkerbell13]

Hi, I don't get migraines, but do have ET and do have similar headaches coming and going on left hand side....think may be tied up with platelets going higher....sending you best wishes, Tinkerbell.

[azaelea in reply to Tinkerbell13]

Thanks for your reply. It is a comfort to know you have the same although I'd rather neither of us suffered. I'll find out from Haematologist if higher platelets cause it. I'm currently just on Aspirin. Platelets range between 530 to 690 (too high)!! Regards, Fran

[Tinkerbell13 in reply to azaelea]

Think my platelets much higher than yours at the moment (!)....but does make sense that they could cause headaches....like some of your correspondents, I find ordinary pain killers don't have any effect on them. But do think when I start drinking much more water, they do improve a bit. Wishing you well. Will be in touch again if come up with any other ideas or solutions and do let us know how you get on. Tinkerbell.

[Sksarj]

Hi Fran I too have ET 6 years since diagnosis, I am on Hydroxy and aspirin and have suffered from headaches, the worst ones over my left eye. Specialist nurse called them cluster headaches,just recommending a co-proxamol or similar (which does not work for me). They seem to come over a period then I don't have them for months, so it's difficult to pin down a cause. I also get the feeling of grit in my eye at times also. Would be interested to hear what your Heamatologist says. Sue

[azaelea in reply to Sksarj]

Thanks for your reply. It does seem you have similar symptoms,Sue. I will post again when I have some answers from Haematologist, hopefully. Regards,Fran

[lizzziep]

I've been getting headaches lately, when I went back to haematology and mentioned it the specialist nurse said it was just headaches, which I don't get very often. However my results showed my platelet number had gone up by over 100 since my last visit, so I think it is connected. I also got the pain in my left eye as well as headache right on top of my head.

[azaelea in reply to lizzziep]

Thanks for reply,lizziep. I think it's beginning to look like higher platelets are the cause. I'm only on Aspirin at moment but will probably be going back on Hydroxy when I see Haematologist.

[JackLina]

Yes, I have suffered that and the eye thing. I believe the eye grittiness is caused by dehydration etc. but not up to speed with the neck and head, which I am suffering as I write. It tends to last for days with me and varies in severity. The last couple of nights it has woken me in the early hours and prevented me from sleeping after 4 a.m. Haematologists just says paracetamol! Clearly he has not suffered it. Hope your's provides a more effective remedy . ATB.x

[azaelea in reply to JackLina]

Yes, your symptoms sound exactly like mine. I will let everyone know the outcome of my appointment with the Haematologist. Thanks for your reply. It helps to know other people are having the same troubles.

[JackLina in reply to azaelea]

Thank you. I'm at a point where I'm so confused regarding which symptoms are caused by the ET and which by the Pegasys, which I'm on. I suspect its the condition because I've been experiencing those symptoms for years and treated for a trapped nerve and damage in my neck,. Hey Ho!

[azaelea in reply to JackLina]

Thanks for replying. I know everything is so confusing! I'm not on Hydroxy at moment,just small Aspirin but will be going back onto Hydroxy . I'm also on Letrozole (oestrogen inhibitor) after breast cancer op. so don't know how all these drugs mix! I'm on Blood pressure pills and Prednisolone as well! My poor tummy wonders what's coming next!

[JackLina in reply to azaelea]

You need lots of plain yoghurt. You poor love. These things clash and cause all sorts of problems don't they? I remember my mother being so ill with all the drugs she took and vowed to stay as drug free as safely possible. When they creep up on you as yours clearly have it makes it impossible though, doesn't it? Keep smiling and eat yohurt! x

[Searcher56]

I don't usually get headaches but a few days ago I woke up in the middle of the night with a headache at the front and more on the left side of my head. Also my nose and sinuses were very dry. I got up and had a large glass of water and after that I could sleep again. I was surprised because I do keep well hydrated but for some reason I obviously wasn't that night. I am on 9x500mg HU per week.

[azaelea in reply to Searcher56]

Thanks for your reply. I try to keep hydrated but perhaps not enough. Will try and drink more glasses of water.

[Kinsale]

Hi Fran. Out of the blue, I developed a condition called Primary Cough Headache. It was a continuous headache that was magnified when I coughed, sneezed, laughed heartedly etc. Whilst it started around time I started on Hydrea, at best I think there was a ‘dotted line’ connection with my ET, rather than a direct cause. In the end it lasted 20 months and in hindsight I think my physiotherapist was right in his belief that it was my second and third vertebrae in my neck being out that was behind the whole drama. So perhaps you may want to explore this angle. I’m in Australia and I went online looking for a physiotherapist who specialised in long term headaches. I found one nearby and he was brilliant.

Cheers

Mark

[OZland in reply to Kinsale]

Hi Kinsale Are you in Sydney by any chance? Got those bloody headaches and occasional neck pain Looking for good head dr

[Kinsale in reply to OZland]

Hi Ozland. I’m at Lake Macquarie, just south of Newcastle. The physiotherapist i use is in Newcastle.

[Tico]

Hi azaelea, because you are relatively new to being diagnosed with et, you should definitely get it checked out if concerned because of the higher risk of clots. I've recently started getting painful headaches that start as soon as i wake up and lift my head off the pillow, it's a searing pain at the back of the head. I have had it 3 weeks constantly, until 1 day about a week and a half ago the pain became so unbearable on the saturday that i got an emergency appointment with the gp monday gone, he mentioned migraine and i told him i had not got migraine symptoms,just a searing pain at the base of the head which spread. He mentioned a C.T referral but i remembered the local pharmacy had recently changed my usual branded meds for epilepsy and asked about that, gp said brand should never be changed! Upshot is, he gave me a prescription for 'migraine' and a new prescription for my usual brand of meds with a review in 10 days time. I've since had another emergency appointment with gp because the migraine meds said 'Do take if you have had a heart attack or stroke'. l have had 2 strokes! He gave me new meds and i go back to gp friday. Still getting the searing pain and nothing is working as of yet but i would implore you azaelea to get it checked and other forum users to double check you meds and contraindication with other meds and other health conditions, even gp's receptionist was gobsmacked when he prescribed the first meds with my history! Hope your headaches resolve soon but if possible phone your cns. Sending you a big hug and hope you are managing your other health problems.tina x🤗

[azaelea in reply to Tico]

Thank you for your reply, Tina. I'm so sorry to hear what you've been going through, and still are. I wouldn't have thought that your pain is Migraine as you are suffering it at the back and base of your head. The very word "Migraine" means "hemi" , one-sided and the Migraines I've had throughout life have always been on the side, mainly left, where this pain has been, but only lasted 2 days at most. I agree with you about checking carefully which medicines we are prescribed to see the contra-indications. Our GP's can't possibly be expected to know all the different drug ingredients and their reactions to each other. We do have to look after ourselves !! I do always try to check when given a new prescription. My thoughts are with you and hope you get to the bottom of what's causing your bad base headache and get rid of it soon. Hugs from me too. Fran

[Tinkerbell13]

Hi, it's me, Tinkerbell again....been thinking, wonder if you should check re eye. I had similar grit sensation and eventually became infected, caused by what is known as 'dry eye'....and needed to get eye drops, which relieved it. I wished I had gone sooner to the GP, as it became quite painful. Eye drops I got from the doctor are the nearest thing to our own tear ducts, called Celluvisc and I do recommend those, on prescription or can buy from pharmacy. Thought worth mentioning. Don't know if dry eye tied up with ET. Best regards, Tinkerbell.

[azaelea in reply to Tinkerbell13]

Thank you Tinkerbell for thinking about me and my eye problem. It seems to be better now and I remember a few years ago my Optician on a routine test prescribed some eye drops to use as I must have had that problem at that time. Hopefully I'm rid of that part of the left sided difficulties for now anyway. I'm coming round to thinking the pain in head is related to my neck and shoulder which is bad at the moment. I really appreciate your thoughts and will get some eye drops if it returns. Best regards, Fran

[Tinkerbell13 in reply to azaelea]

Also possibly a nice osteopath to help with neck and shoulder? only say this - as one has helped daughter with awful stiffness and pain and really made a difference. You ar having a time and thinking of you and wanting you well, Tinkerbell

[Cja1956]

When I was first diagnosed with ET Jak 2 positive, I had gone to my regular doctor because I was having really bad headaches that one go away. He took my blood And they sent me to a hematologist who confirmed ET Jak2. Very soon after I started taking the hydroxy and anagrelide the headaches went away. Eleven years later the headaches have come back. I pretty much wake up with one every day. I now have PV and anemia so I just attribute my headaches to my illness. But you should get them checked out.

All the best, Cindy

[azaelea in reply to Cja1956]

Thanks for your reply. It seems to be easing over the last couple of days. Dare I say it! I'm certainly going to add it to my list of questions for Haematologist. Sorry to hear your ET has now developed into PV. Regards, Fran

[LucyAshtonGeering]

Hi Fran,

One of my main ET symptoms is left-sided migraine. It can present either with or without aura, and is sometimes hemiplegic (when the lhs of my face immobilises). Not pleasant, but finally made manageable, after 5 years of trying various treatments, with a combination of Propranolol, paracetamol and Zolmitriptan. I’m currently also starting to try CBD oil to see if that helps (as my GPs have only just realised there’s a contra-indication with propranolol and asthma, which I’ve had all my life, so I’m going to phase off the Prop. onto the CBD).

Both my consultant and an MPN specialist say the migraines are definitely caused by ET, and so I get my migraine meds for free. I’m only on baby aspirin for the ET itself as I’m 39 and my platelets are around 550-600. Keep us posted on what your haematologist says,

🧡 Lucy

[azaelea in reply to LucyAshtonGeering]

Thanks for replying, Lucy. It is interesting to know Migraine is linked to ET. I was wondering as I have suffered with really bad Migraines all my life but they seemed to get less and less after the Menopause. However since I was diagnosed with ET I have been getting the Aura a lot but only with minimal headache, but always on left side. I do wonder if this recent one is Migraine, only lasting a lot longer. I'll find out from Haematologist. Regards Fran