Feeling low and fed up: I have now been suffering... - MPN Voice

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Feeling low and fed up

I have now been suffering with persistent headaches for nearly 4 weeks or their abouts to the point were for the first time in a very long time it feels like it's wearing me down and i'm starting to feel low in myself. Don't want to feel like this but getting frustrated with constantly hiding it and making out it dosen't bother me. When it first started i was initially only having them on waking, i was taking co-codamol at the lower dose but one day upon waking the headache was very severe and i couldn't shake it all day,i realised the headaches had gone on for 2 weeks or more and booked an emergency appointment with gp. He straight away said migraine,i told him i didn't have any migraine symptoms, ie, aura,vision problems etc. Their had been a issue raised about a change of brand of my usual epilepsy drug, the gp issused a new prescription for my usual brand and 'MIGRAINE' meds even though i was specific and told him it was a stabbing pain in the back/base of the head! Next day back at gp's because couldn't take them as people who have had a heart attack/stroke should Not take them! I've had 2 strokes! He gave me another med again for migraine! Back at gp's yesterday for review. Told doctor meds only easing pain temporary and taking them throughout the day. I was seen by haemo last week but couldn't be bothered to mention them to him because of his ignorant behaviour when i had virtually had too force a good morning out of him! Gp as referred me to head clinic,whatever that is and gave me a repeat prescription for MIGRAINE meds in the meantime! I went straight to a friends and i asked for a box of her stronger painkillers she no longer takes. Why give a patient meds that are plainly not working? Just need proper pain relieve. Is that too much to ask for? tina

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Hi Tina. I'm sorry you're having a rough time with your doctor. Have you ever heard of occipital neuralgia? It can cause stabbing pains in the back of your head and neck. I don't know what it's like in your country but in America doctors don't like to prescribe pain medicine anymore because of risk of drug abuse...so many innocent people are made to suffer for it. If it is something like occipital neuralgia than traditional pain medication wouldn't work but instead something like a neck massage or muscle relaxer would be in order. I hope you feel better soon. 🤗

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Thanks mel, had a long talk with gp,he said if not migraine, which its not! He thinks my plts are more the cause as in dec they were 299 now nearly 600. I've regually had a lot higher. When i had strokes, well over the 1000 mark. He was explaining about the blood being too thick and plts behaving abnormally, which a lot of us on here know about. Really had problems shifting it yst and today and coincidently,cyanosis in fingers on left hand and the numbness in tongue really bad with the cold,something we've spoken about before and experience ourselves. Maybe it is the blood being too thick and plts abnormal but my plts being unstable for 11yrs and haemo lets it continue? I'm just angry i felt i could not talk to him about it last week! I really understand now mel why you haven't seen your haemo in quite some time! Feel like phoning monday and telling them where to stick their appointments and meds! tina.

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I feel your frustration and anger. With your history of strokes it's important that your doctor takes your symptoms seriously. I wish I had an answer for you but you know I didn't have any better luck with my own doctor. Luckily I don't get headaches that often but I can see where they would make you downright miserable if you were having them on a regular basis. 😞

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Good Morning Tina.

I’m not surprised you’re feeling a bit down. The headaches could be caused by a multitude of things. That is the frustrating part, not knowing!

Did anything specific happen/change four weeks ago? You mention it develops on waking. Could it be coming from your neck? Maybe an orthopaedic pillow might help! Notably, we are less hydrated in a morning. Has your water intake decreased? I’ve been a bit guilty of that throughout the Winter. Some medications, especially painkillers can cause headaches. It’s also significant that your platelets have increased.

It sounds like you don’t have a good relationship with your haematologist Tina. Maybe you should consider a referral to another haematologist, preferably an MPN Specialist. It’s essential that you feel comfortable enough with a Consultant to discuss any new symptoms (headaches), especially with your previous history of strokes.

Mary xx

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The only change i can think of is a different drug the local pharmacy subsituted around 8 weeks ago for my epilepsy. When i mentioned it to gp, he said they should never have changed the brand i had always took and issued another prescription with the scrict intructions to the pharmacy next door never to do it again,specificially with it being epilepsy drugs.tina

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Hi mary, i would just like to thank you and others on here who replied to my post who finally made me realise that i certainly need a change of haematologist,something i've known for quite sometime in reality. I have started the ball rolling and i am waiting on another call back from my cns,who i will be sorry to lose because she was and is very supportive and someone you can have a laugh and joke with,as well as being practical. Best wishes,tina,x🤗

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Well done Tina, I’m sure this is the right decision. My CNS is lovely too, so I understand your predicament. Let us know how things go.

How’s the headaches?

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Headache particularly troublesome,painkillers eased it. Spoke with cns today and she knows a nurse who is married to a mpn specialist at the Q/E Hospital in Birmingham,she is going to get my current haemo to refer me, a good thing too because i was looking back at my rbc's and noticed they had been low for a while,something the haemo never mentioned,i knew i had been struggling for a while with my hgb, thats why gp wanted to continue with iron tablets but they gave me a bad stomach and i said i would eat more iron through diet alone and the hgb seems to be rising but rbc's still low. I'm not a natural worrier but i'm starting to get a niggling feeling about this,especially as i had abnormal bleeding in december gone and other little things like slightly being breathless quite a bit,which i put down to a slight cold recently,i am starting to worry now about the possibility of mf. Cns said she will speak to me friday,i suppose its a waiting game now. I hope i don't regret not seeing an mpn specialist sooner about my erratic plts.tina.x🤗

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Hi Tina,

At least you’re putting a plan into action. As far as your care goes, things can only get better now!

I can’t remember what your hydrea dosage is, but this can lower RBC count too, which also could be responsible for your breathlessness. Mine have been slightly below a few times. Try not to worry too much. You’ll be in good hands with an MPN Specialist.!

Mary xx

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Hydrea 3daily in week, 4 weekends and i've actually been on 5 a day in the past without it effecting my hgb and rbc's which i've never had a problem with. As you say i will be in better care with an mpn specialist and not a an ignorant and arrogant general haematologist who dosen't class et as cancer and calls it a disorder and thinks the symptom burden of some of us are a minor convenience we should put up with,even when i've walked in his office with both my hand's blue not just the fingertips and the cns remarking how painful it must be.

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Hi Tina, so sorry to hear about your headaches, that must be awful! Added to that, it sounds like you need a change of haem. Sometimes neck or shoulder osteoarthritis can cause quite bad pain in your head in the area you describe. It’s important to insist on getting it checked out properly and please be careful taking someone else’s meds in case they clash with anything you are already taking.

I think your haem should also know about these headaches in case they are related to your MPN but totally understand what it’s like when you have a medic with poor patient empathy and bedside manner! Can you ask for someone else?

In the meantime, sending you huge but gentle E hugs. Please insist on answers/better treatment. Kindest regards Aime xx💐💐😻

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Thanks Aime, the friends meds i took i've been prescriped before and i double check everthing i take,thats why i had to see the doctor again when the first lot of meds he gave me i didn't take and had to point out to the gp you couldn't take if you had had a stroke or heart attack! I definitely don't think i can go on with current haemo,i don't think some haemo's know how ignorant they are being when they can barely look up at you or offer their hand,something i always do. Not all doctors/haemo's are like this,so i won't tar them all with the same brush. Fortunately aime, myself and the gp have had a good talk in ruling out certain things what could be causing them,ie, change of branded epilepsy drugs, stress(the doctor remarked he had never seen me happier since the birth of my granddaughter back in september)etc. My gp as referred me to the headache/migraine clinic at the Birmingham treatment centre and told me to get in touch if i didn't hear anything in 2 weeks,so hopefully we will soon get to the bottom of things,i just wished i hadn't waited so long to see the gp. I hope you are doing well aime,i know you have been through the mill yourself of late,it is a very good job we have this forum to discuss our concerns and to ask for advice when things sometimes go awry or we just need a pick-me-up. Sending my very best wishes to you aime.xx🤗

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Persistent headaches in the morning (along with a few other symptoms) were what lead me to investigating further and ultimately to a diagnosis of PV with elevated platelets. Venesection provided rapid relief and now that blood counts are within normal levels I rarely suffer from headaches. Certainly worth discussing with your harm to see if something is going on with your blood counts. I hope you find some relief soon; constant headaches - especially in the morning - really get you down.

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Your so right Marossi! Bit by bit in the last few weeks it as ground me down. It is one thing trying to hide how much it is getting you down in front of friends and family, especially with me because 9/10 times i'm laughing and joking and i'm seem as a joker who dosen't take life too seriously or myself for that matter. In regards to pv, my red blood counts have never been an issue,i'm etjak2 the problem is were i always virually without fail always have big high and low jumps not just slight fluctuating plts between visits. I have never experienced headaches like these even when i was experiencing headaches before diagnosis when i had vision problems too. Just hoping to getting to the bottom of the issue soon. Kind regards.tina.x🤗

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Hello Tina,

I am so sorry to see that you are having such a difficult time at the moment, both with the headaches and with the batty medical wallahs (can't help but think it is they that should be dispatched to the head clinic as soon as poss... but one can't really say these things!! Ha!). You have been such a wonderful help to so many on the forum here with your caring, thoughtful and sensible comments, and and I am sure that all of us who have been touched by your kindness send the very best of best wishes to you, and do so hope that you begin to improve really soon.

All the Very Best,

Peter xx

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Hi peter, thank you so much, i think yesterday it had just it me full on, i had been exhausted all week constantly going back to sleep when i could have been doing other things. The gp commented he didn't see me that often and knew i had been struggling and that i'd put of visiting him and it had been going on for a couple of weeks. The breaking point peter was when i told the gp friday that i didn't feel able to tell the haemotologist about it. His ignorant behaviour on entering his office and then talking on the phone during constultation just demoralised me. For me to not feel able to bring it up, i knew that was not a good relationship to have between doctor and patient. I also knew it could not go on. The plts issue, with continuing high jumps and drops is just ' one of those things'. I think i could have done with seeing one of you wonderful stories yesterday to bring a smile to my face. Hope you are feeling a bit better in yourself ye 'olde swashbuckler or is it biggles'? Wishing you and yours and not forgetting those 2 beautiful cats my kind regards.x🤗

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Dear Tina,

Big hugs to you all the way from my pirate ship in NZ! My heart really goes out to you. I'll do me best to swash and buckle up a tale of daring do to bring that smile to you as soon as poss. Just hung up my wooden leg, put a cover over the parrot, and clambered in to my hammock for a spot of shut eye, but hope to arise at the crack of dawn and will sharpen my quill pen and see if it will bend to tales of treasure ships and strange tropical lands! In the mean time, all the very best to you from Captain Peg Leg Pete! :-)

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Thank you so much peter, as ever you have bought a smile to my face.I Look forward to you putting quill to paper my friend. Just wondering though what next? We've had bi-planes and pirate ships, with your creative mind i'm expecting something along the lines of 🚀or even 🛸next. Bon vogage until then my friend. tina.x🤗.

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I agree wholeheartedly with what you say Peter. Tina has helped so many of us on this forum and we send our best wishes to her that she gets things resolved as soon as possible. Fran

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Hi Tina

Sorry you are struggling with pain + rubbishness from the ‘powers that be’!!! - I’m glad you’ve got to see your GP and sounds like you might get more help from that end - your haem sounds much like mine was before he got well and truly ‘ditched’ (and was the best thing I have done - that was with the help of my GP and has worked well for me though if it hadn’t I’d have gone to a different hospital)! Hang in there (I know it’s really hard when you are hurting) hoping things improve - keep us posted.

Anne-Marie xxx

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Thanks Anne-Marie, i do think it's about time this haemo of mine got well and truly 'ditched'. The only reason i've hung on with him is because i have a very good relationship with my cns and of course how close the hospital is to me, i think in retrospect i should have seen another haemo sooner. You cannot get a straight answer off him for love nor money. For example when i asked him what my allele burden was,he asked why i wanted to know, when i persisted he said he couldn' t find it in the files. When i asked about my plts constantly having big jumps and dips,his answer was, 'it's one of those things'. When he's regualary seen the cyanosis in my fingers and hands its it could be the et when the cns mentioned the possibility of raynauds or other vascular problems. Then last week was the last straw. When someone,especially your haemo can show you such ignorance, its time to do something about it. Not only was i too exhausted to bring the headaches up, i was too demoralised to talk at all with him. I will phone my cns tomorrow and bring the issue of me getting a referral, preferably to an mpn specialist around the Birmingham area. I would be grateful if anyone on here could recommend someone in that area. Wising you all the best Anne-marie. tina.x🤗

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Think that is a good plan!! but yes do some research on specialists (my GP put the referral in for me, but it was my clinical nurse who gave names of the options I could go with) - I think all the CNs whoever and wherever they are attached to seem to keep their ‘humanity’ and empathy.

Good luck and please don’t feel defeated - you’ll get yourself back in control.

Anne-Marie xxx

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Thanks Anne-Marie, definitely won't feel defeated, just need to shake off exhaustion and get a resolution to these headaches. Fingers crossed🤞that will be sooner rather later.tina,🤗

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Hi, Tico. I’m sorry you are having so much trouble with your headaches. I was getting headaches daily for the last several months. During that time, my platelets were very unstable (between 600,000 and 800,000) and I became anemic. My hemo put on an extra dosage of jakafi last week and for the first time in a long time I didn’t wake up with a headache. I see my hemo again next week and hopefully, that was the answer. The only caveat is that Your headaches seem a lot sharper than mine and in the back of the head and neck and mine are in the front of my head. You should have them checked out maybe by a either an orthopedist or maybe even a neurologist.Or even a chiropractor. Drugs are not always the answer. Hope you feel better soon.

Cindy

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Hi cindy it probably will be a neurogist i see, after gp referred me friday gone. I know painkillers are not the answer, thats why i went to see gp. Also in addition i take enough medication already. Atb,tina.x🤗

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Well, I hope you find your answer soon. It’s difficult to function with those awful headaches. Let us know what you find out.

Best wishes, Cindy

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Thanks cindy. tina.x🤗

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Hi Tina, you were kind enough to answer my headache query last week and I'm sorry to hear you are still suffering badly with the headache and stabbing pain in the back/base of your head. Hopefully the "head clinic" will find out what the problem is. I'm not convinced it's Migraine, but your GP seems to be certain it is. We sure don't want to force more pills into us if they're not doing any good! Really hope you get some satisfaction soon and the headaches are banished for good. By the way (touch wood) my left headache seems to be a lot better,dare I say it! I do think maybe it is related to my neck and shoulder. Best wishes, regards,Fran xx

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Hi fran, i'm pleased to hear your headache issue seems to have resolved itself now. I can't remember how long you were having headaches for now but in my case it as to be for around 4 weeks and to be honest i can't remember having 1 day were i've been completely headache free in that time, wereby its either been bearable or just made me feel downright miserable especially in the morning. Did your headache resolve itself or do you think it was anything you did or changed. Best wishes to you fran.tina,x🤗

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It just seemed to wear off slowly each day, I'm still afraid it might come back as my neck and shoulder on that side are still painful. Here's hoping not! It lasted about 2 to 3 weeks I'd say. Will still ask Haemo about it. I really feel for you and hope the clinic you've been referred to can do something for you. The Haemo I saw has left the Hospital (James Cook University Hospital,Middlesbrough) and gone to Australia I hear, so I'll be seeing someone new. Hope they are well versed in MPN's! Thoughts are with you. Fran xx

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Hello Tico, oh bless you my lovely, it is such a shame you are feeling so rotten, and yet you are still able to be so very caring and positive to people on this forum, you are such a great help to people here, and we are all sending you our love and hugs, all the very best wishes Maz x x

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Thanks maz, i'm waiting on a call back regarding a referral to an mpn specialist. Would it be possible to send me a few names in the Birmingham area that i could research. I came across one but he appears to have only an interest in mpn's rather than being a specialist. Kind regards,tina,x🤗

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Just to let you all know,spoken to my cns and she knows a nurse who is married to a mpn specialist at the Queen Elizabeth Hospital,Birmingham. She is going to ask my haematologist to refer me over there and get back in touch with me friday. I can't believe it as come to this and how upset this as made me as their are 2 very capable and humourous cns there, who at the same time can be emphatic when the need arises,that is the only thing that i will miss and not an ignorant consultant who cannot or will not give a straight answer. I writing this with tears rolling down my cheeks,that black country humour seems to have temporary deserted me.tina,x🤗

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Hi Tico,

I am 57 diagnosed with straight sinus thrombosis 2009 then ET Jak 2 pos.

I believe you need a second opinion by hematologist who is familiar with your condition MPN. Just because I did not have the courage to ask for this I sat with dangerous platelets for a year following brain blood clot.Your situation is like mine when you have had one clot you are 10 times more likely to have another.I dont want to scare you but ,You have to push your situation is not one I would feel safe with.Make it a priority and you have to fight even though you feel so vulnerable and unwell.Do you know of an advocacy group or cancer support , I believe you need support do it and you will hopefully like me get to safe zone.

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Hi lavender, i been dealing with that today through my cns and she is organizing it and going to ask my haemo to refer me to an mpn specialist in birmingham. I know about the implication of clots and bleeds to the brain as you rightly say. How are you by the way,i haven't noticed you post since i saw i think it was 2 but definitely 1 very scenic view of that beautiful idyllic water picture you posted way back. How's the treatment going? Sending best wishes, tina,x🤗

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Hi Tico,

due to some health issues I have not been able to log in.I am getting there, had a brain scan today to rule out early stage dementia, the chances are low but now I have a recent scans to note any changes.I wish you the very best of luck be strong and you are doing all the right things.

Lav007

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Hi Tipo, I have neuralgia your pains sound like that, I bathe my head in warm water or heat pad that seems to help better than pills, it is draining, it is a nerve pain and I think part of our condition. They usually hand out anti depressants for the pain. I don't take them, I take indometacin if I catch the pain before it starts they give relief, but I have just come out of 3weeks of severe headpains no relief with pills and potions, the heat pad offers comfort and relief and sleep, good luck

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