ET and Left sided headache.: I have ETdiagnosed... - MPN Voice

MPN Voice

10,832 members15,115 posts

ET and Left sided headache.

azaelea profile image
30 Replies

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

Written by
azaelea profile image
azaelea
To view profiles and participate in discussions please or .
Read more about...
30 Replies
Rachelthepotter profile image
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 profile image
azaelea in reply toRachelthepotter

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

Bridie123 profile image
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 profile image
azaelea in reply toBridie123

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 profile image
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 profile image
azaelea in reply toTinkerbell13

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 profile image
Tinkerbell13 in reply toazaelea

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 profile image
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 profile image
azaelea in reply toSksarj

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 profile image
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 profile image
azaelea in reply tolizzziep

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 profile image
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 profile image
azaelea in reply toJackLina

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 profile image
JackLina in reply toazaelea

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 profile image
azaelea in reply toJackLina

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 profile image
JackLina in reply toazaelea

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 profile image
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 profile image
azaelea in reply toSearcher56

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

Kinsale profile image
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 profile image
OZland in reply toKinsale

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

Kinsale profile image
Kinsale in reply toOZland

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

Tico profile image
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 profile image
azaelea in reply toTico

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 profile image
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 profile image
azaelea in reply toTinkerbell13

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 profile image
Tinkerbell13 in reply toazaelea

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 profile image
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 profile image
azaelea in reply toCja1956

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

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 profile image
azaelea in reply toLucyAshtonGeering

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

Not what you're looking for?

You may also like...

Rash and ET

Does anyone with ET get rashes? I periodically get a rash, usually on my neck, that's itchy. It...
Camelian profile image

PV Related Headache?

I was flying back from Spain, just on the descent into the airport and experienced a sudden sort of...
Bluetop profile image

Headache Remedy

Does anyone know if it’s ok to take any other headache medicine alongside 81mg of aspirin and...

Critical illness for ET

Hello I was diagnosed with ET approx 11 years ago. It has been stable which is good because I was...
Dora1971 profile image

Hair and ET treatment.

Hi Folks, just doing some research before my next appointment for my ET review in a few weeks time....
Janis12 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.