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jemstone49 jemstone49

Headache for 5 weeks-HELP ME!!!!!!!

Hello readers,

I am a 12 and a half year old girl. By the way, I'm not pregnant, and haven't started my periods yet. I have many friends, don't feel too stressed and I'm a high achiever. I came home from school on the 2nd of May with a banging headache. I tend to get headaches a lot anyway so I thought it was one of those that went after taking Paracetamol. I have a family history of migraines and my mum is on a Beta-blocker daily, which got rid of them!

Right, I will list my long list of symptoms. This headache has lasted 5 weeks. It is continuous and rarely goes. It is there when I wake up in the morning and also when I go to bed! For the first half of the 5 weeks it was like a band around the top of my head, however, now, it is mainly at the back. I feel like there is a lead weight tied to my skull. It is also worse with reading and loud noises. There are also other symptoms:

- I struggle to get to sleep and recently, it has woken me up at  about 5am and sometimes up to 3 times in one night .

- Also, I have felt sick on and off for much of the time but have tried   to eat a normal diet.

- Also, I have changed temperature a lot and go suddenly from  freezing cold to boiling hot and sweating.

To get rid of these symptoms, I have been to the GP 5 times. They told me it was a virus the first couple of times and that I should take Calpol, Iburprofen and Paracetamol. Later on, I was told to try Co-codamol, which gave me bad side affects. The second to last time I went, I got a referral to CDU (Clinical Decision Unit). The last time we went, my referral was sped up. 

I went to CDU last Wednesday, where they did neurology tests, like reflexes. Then we had to go up to the eye hospital and they looked at the back of my eye- retina, optic nerve and so on. Everything was OK. I went back this week and they took 2 blood samples, which were fine and they did an  MRI scan, which was fine.

I was told to avoid taking anything, so I have. I found headache cooling strips helpful for getting to sleep. I have also been to the opticians and all was OK. I have been doing a headache diary as well.

I have had 4 weeks off school and can't read without it getting worse. I've missed the end year tests. I can't go on like this! I tried school and everything got worse. We've rung 111 twice and they weren't particularly helpful. I've also been to 2 pharmacists. I need some help.

Thank you for reading, if you managed to last that long. If anyone out there has similar symptoms or is a health professional or knows anything, please reply.


With regards, Jemma (JEMSTONE49)

Help me!!!!!!!!!!!!!!!!!!

330 Replies

  • personal20 personal20 jemstone49

    Hi Jemma,

    Well, it seems like you have done quite a lot already to find the cause of your headaches.  But even though you had an MRI and other tests still you could have a problem and they just havent found it yet.  You need something to take away the pain, then something to stop getting it in the first place.

    As this has been going on so long, your Dr needs to refer you to a neurologist who will make an action plan and give you meds to deal with it.  Sometimes stress can aggravate the condition, so if you are stressed from school or something else, try to reduce this as much as you can.

    If your GP wont refer you, get another Dr to see you at the surgery.

    Good luck Jemma and best wishes.

    Take care

    Let us know how you get on

    • personal20 personal20 jemstone49

      Hi Jemma,

      Your parents are amazing and taking you to A&E was the right thing to do!  Do you have something to control the pain then, or have you just got to use ordinary painkillers?

      Good luck and best wishes,

      Take care

    • jemstone49 jemstone49 personal20

      do you know what its like to have pain every single minute of the day for 9 months and for your family to think it is in your head and for the people you love to give up and to paste a smile and to say your fine when it hurts to stand up when all you want is to cry and for school to think it is anxiety about school when the pain in your head makes you feel like crying and having a headache all the time and no medication working? why does no one understand? why do teenagers bully me because i have a chronic illness?

      bad day

    • personal20 personal20 jemstone49

      Hi jemma,

      Sorry you are having such a bad day and getting so much negativity thrown at you.

      It's tough when people around you don't believe you when you are screaming out to them how bad you are feeling.

      I can't make them believe you, but I believe you as I am a fellow sufferer and I have had take months off work because of different migraine/headache conditions, so believe me I KNOW what you are going through.

      Remind me again please what meds you are taking and maybe I can suggest something else.

      As for other teens at school, they are aways attracted to people who are different in some way and make fun or physically bully you.

      I know everything is tough Jemma, life in general can be tough at times, but I believe you will look back at all this one day as being a distant memory, when you are having a great life, filled with love and hope for the future.

      Try to find it inside of you to rise above all the rubbish that is going on right now and dont miss any of your appointments.  Explain to the drs and therapists just how bad you feel.

      Hang in there Jemma, I BELIEVE you and I BELIEVE you can get through this!

      Take care and best wishes.

      Let me know the meds again please


    • jemstone49 jemstone49 personal20

      propranalol which is keeping migraines at bay pretty well only 6 a month now and they mainly come at weekends

      cocodamol and metoclopramide if i get a migraines, i only use them if i am not at home for the placebo affect otherwise i just lie down

      vitamin d supplements


    • personal20 personal20 jemstone49

      The Cocodamol might me making the headaches worse.  I would suggest to your dr you try Zolmitriptan when you get bad headaches.  It's like a nasal spray. I would also suggest Gabapentin too.  I have checked and at your age you can take them both,  The dr should work out what dosage to give you.

      This should be investigated properly as its disrupting your life so much.  I would also suggest if you are able to see the specialist Dr in London, then he can help you so much more as he is a specialist in the headache field,  I see him and his team and they are great

    • jemstone49 jemstone49 personal20

      i never use co-codamol i last used over 3 months ago

      i just have 1 headache all the time and then i get migraines on top

      i haven't been pain free for 9 months

      it has been diagnosed as chronic pain

      does that change what you said previously?

      i am seeing pain specialist psychologist but now i go to pain support group instead, good old NHS, which i hate as it causing me migraines because it is the same time as dinner time!

    • personal20 personal20 jemstone49

      No, it doesn't change what I said Jemma.  Suggest the meds I have mentioned and see what they say.

      But clearly the plans they have put on place for you arent working because of your poor quality of life.

      Yes, if you skip meals then this will aggravate your headaches.

      Are you sleeping better now, because if thats disturbed too, it will cause problems.

      See if they can change your appointment times so it doesnt clash with your meal times

    • jemstone49 jemstone49 personal20

      would the medication help migraines? as i can cope with them and no medication will touch the headaches according to ALL medication professionals.

      my life isn't that bad, i don't think, this is just a one off as i am going back to school from 10.45 till 3.10 now, except today

      no i think sleep causes all of this are there any tablets you can recommend as i am seeing my consultant Wednesday and we are soooo lucky to see him. i get about 2 hours per night, i don't sleep because of pain and lack of sleep causes pain!

      it isn't an appointment, it is a support group after school soo the school doesn't get funny.

    • personal20 personal20 jemstone49

      did you try putting the lavender oil on your pillow?  Also you can get Chamomile drinks to help you sleep.  Ask the consultant about Melatonin and insist how badly your sleep is affected.  Once you get sleeping better everything will be better.

      If you are in so much pain at night then  I do suggested taking the Cocodamol as this will help you sleep also.

      But do try the herbal stuff as I think they will help.

      Glad you are doing some school tomorrow

    • jemstone49 jemstone49 personal20


      i tried it and nearly vomited!

      i tried melatonin and got a rash and it didn't work!

      i do school everyday but today i had a migraine through the night sad

      i'll try co- codamol however i am aware you cannnot take this alot through fear of addiction, is there anything else?

    • personal20 personal20 jemstone49

      You can try valerian from holland and barrett.  You like the horlicks I seem to remember which is good at night.

      try not to eat too close to bedtime and suggest the Gabapentin to control headaches and use the Zolmitriptan nasal spray for when you get a migraine, dont exceed 2 doses in 24 hours though

    • jemstone49 jemstone49

      oh dear it says over 18

      where is it you found gabapentin? was good for headaches as online it says epilepsy and my consultant has a habit of poo pooing things like that if it doesn't directly say it and it is just a grudge

  • DR-RAY DR-RAY jemstone49

    I thought I had migraines,...or tension headaches on my temples a lot....after trying everything I started taking desloratine (certizine) (loratidine)  -anyway they are second generation antihistamines   ----i have always had mild allergies - hayfever, dust, headaches are getting fewer and milder....the meds stop the release of hitamines in the body....histamines can cause inflamation and therefore pain, arthritis, headaches,   sinuses,   etc. You can buy the antihistamines over the counter at your drug store....try one a day for ten days....they may work for you,.....sometimes you cause is so obvious!!!

    Ray   Canada

  • jemstone49 jemstone49


    Everyone has told me to try going to school but it made it worse last time

    and reading, loud noises and focusing makes it worse

    what do u guys think

    thanks for any replies!!!!!!!!!!



    • personal20 personal20 jemstone49

      Hi Jemma,

      Well as for me I have cluster headaches and hemiplegic migraine and this usually hospitalises me when I get it, because I get paralysed down my left side.  The cluster headaches are  like red hot pokers in my eye.  You can check these out on google.  So I do know a bit about headaches lol.

      Well if you are feeling better, give school a go, it will be nice to get back to your friends I should think too I guess.  Maybe you are allowed some other medicine to help deal with the headaches, if you ask again.  I know I take a medicine called Flunarizine that even is given to kids at Great Ormand Street Hospital, so you wont be too young for that one.

      If it causes a problem again going back to school, then your parents should talk to your GP again about this as it shouldnt disrupt your school as its so important.

      Good luck Jemma and take care.

      Best wishes and keep us updated

  • jemstone49 jemstone49

    just letting you guys know i still have a headache but managed an hour of school today which made it worse tho

    just yesterday i noticed my headache was worse when i clench my jaw, is that important?

    and today, i have developed a pain in my left ear, is thta important too?

    thanks for reading, jemstone49

    • personal20 personal20 jemstone49

      Hi Jemma,

      Sorry you are still suffering with headaches and not being able to manage much school.

      You could have a lot of tension in your neck and jaw, which may be the reason you have these pains when you clench your jaw and with your ear.

      I know you cant take strong painkillers due to you age, what you could consider is indian head massage and or accupuncture, these treaments can work wonders and if nothing else they will soothe you a bit.  Also seeing an osteopath to examine your neck will help too.

      Good luck and best wishes.

      Take care.   Let us know how you get on

  • jemstone49 jemstone49

    ok so um i went to a chiropractor on wednesday and she said my back was off centre and i had a dodgy pelvis 

    i am going again today

    but now i also have back ache and really bad hayfever

    i have lost my apetite and was sick nearly a week ago

    my quality of life is being affected- hope it is spelt right

    i also think my headache is gradually getting worse- could it be the heat?

    for anyone else going through back and neck problems i recommend gentle swimming

    anyone got any ideas

    maybe they missed something simple

    please help i'm really fed up and it is affecting all my relationships

    i feel so useless as paracetamol is rubbish

    any advice

    thanx :D

    • personal20 personal20 jemstone49

      Hi Jemma,

      I agree paracetamol is rubbish for such pains and if you GP wont prescribe stronger, see your Neurologist.

      I am sorry you are still having trouble and I am sure your parents understand how much you are going through.

      I am very happy to offer my support and any info I can supply to you I will.

      What will the chriopractor do about your spine and pelvis Jemma?  I agree that the heat certainly reduces appitite.

      Its understandable you are fed up. but remember this forum is here to listen to you and if we can be of any help we will be,

      Have you tried doing any sort of school work at home that doesnt make you feel worse?

      Good luck Jemma and hope you feel better soon.

      Best wishes and take care

    • jemstone49 jemstone49 personal20

      they won't sent school work as i will supposedly not want to go back to school but what the hell, i love school!

      the chiropractor is going to make my pelvis sit equally by sort of pushing around and push my spine into place and also try to reduce the tightness in my neck

      thanks so much i will try to update you either later today or tomorrow 

      thanks again


    • personal20 personal20 jemstone49

      Thats wonderful at least you can still see friends.  You need their support more than ever to get through this.  Encourage them to keep in touch as much as possible.

      If things dont improve or even get worse, get your parents to take you to A + E again.  You have to get some relief.

      All the best Jemma

  • Pewo Pewo jemstone49

    Hi jemstone49,

    Just wanted to ask, does you headache feel less worse towards the end of the day? I personally feel worst in the morning and it gets better towards the evening.


  • jemstone49 jemstone49

    hello everyone

    so we went to the chiropractor monday and it wasnt really working for me so we have stopped it

    and today we went to A&E were they reassessed me 

    they think it is some kind of stress or emotion causing it but there isn't anything!

    i know theyre all trying to help me but i am getting sooooooooooo angry with all these questions 

    i feel like like i'm on an evil repeat

    -disturbed sleep




    again i can't help feeling like they missed something simple??????????????????

    any ideas

    thanx so much


    • personal20 personal20 jemstone49

      Hi jemma,

      Well its quite possible they are missing something simple and unless you see a really good neurologist then it might never be found.

      Can I suggest that if you and your parents can get you down to London and you are able to se my neuro privately then he could provide some answers!  Get your GP to refer you to Dr Matharu at the National Neurological Hospital in Queens Square and if you can see him privately then you can probably see him sometime next week.  I dont know how much it will cost, as its a long time since I saw him privately now and I can see him quickly enough on NHS as I am a regular lol.

      So, if this is something you are interested I will private message you as I dont want to give phone numbers out publically.

      Best wishes and take care

    • personal20 personal20 jemstone49

      Yes, it will make a difference especially if you can find one that specialises in headaches and there are some.  Yes your dr can refer you to someone for sure on the NHS for free and he may know one that specialises in headaches, trouble is, you know the NHS as well as I do and you may have to wait some time before  you can see him or her.


    • Pewo Pewo jemstone49

      Hi jemstone49, with regards to fractured sleep, I'd suggest tracking it using a smart phone app. It can also wake you up (if you need) at a point within a time range that is optimal based on your sleep phase. I've started tracking mine as I have this symptom. You can try adjustments (sleep start time, pillow, head position, earplugs, etc to improve your quality of sleep.


  • jemstone49 jemstone49

    Hello again

    i am starting feel fed up and not at all like my usual self

    my mum rang the school today and i feel as if they aren't being too helpful

    i'm hoping to persuade my mum to take me to the GP after work

    the school keep saying they want me in but won't let me sit in the medical room?!?

    they also threatening with charges etc. as my attendence is 70%

    but we are trying everything we can

    i don't feel like anyone i know fully understands and even though i know they are trying to help, i wish they could simply leave me alone

    how long do you the wait would be for a neurologist on the NHS?

    has anyone else who has had continuos headaches found the dentist any good cos i'm going in July

    i'm so fed up some times i can't face the day...

    thanks again


  • jemstone49 jemstone49

    Hi all

    i went to the pharmacist a few days back and they  recommended syndol tension headache

    me and my mum tried shopping around but couldn't find it so we went to the GP today

    my GP couldn'y find it either and said there wasn't much else to try but recommened yoga

    i will try it this evening but does anyone have experience with it because my back etc. still hurts from the chiropractor

    any ideas?


  • jemstone49 jemstone49

    over the weekend i was sick and my back pain, possibly from the chiropractor was getting worse so we went  to the minor injures unit where i was assessed by a doctor who suggested it could be thiroid? and also vitamin B12 deficiancy 

    i'm getting fed up cos the school are on my back stressing me and my mum out and i don't feel like i can relax even though i'm tired all the time but i just don't feel like anyone believes me and i wish they could just come and see for themselves

    any thoughts?


  • jemstone49 jemstone49

    i feellike my headache is worse everyday and there is nothing i can di and feel like i can't take any more mentally, physically or emotionally sad

    any advice?


  • jemstone49 jemstone49

    i have had a headache for 9 weeks now and am feeling low but i have an appointent with the paediatrician friday 

    i just feel things are geting worse rather than worse

  • jemstone49 jemstone49

    today i went to the paeds and they did bloods testing for vitamin b12 deficiancy and thyroid- i'll get the results in a week

    i will have areferal for psycology unit to help deal with it

    the consoltant (how ever its spelt) said it could be post viral or a mix of migranes and headache

    here comes the best bit...

    if the bloods come back clear, i will have a 3 month trial of Pizotifen, which could help

    anyone here who has experience with pizotifen?

    thanks again



  • jemstone49 jemstone49

    hi all 

    i have meeting at the school tomorrow about me hopefully returning and i feel sick to the pit of my stomach as they haven't been the best and i am absoloutely dreading it 

    can someone please say something calming or soothing?


    many thanks

    • personal20 personal20 jemstone49

      Hi Jemma,

      Well try to turn the meeting on its head.  Firstly imagine you are the best scholar in the school, super special and without you being there, the school isnt the same.  Treat it as a challenge and a new begining, a chance to start a fresh.  Remember you are marvelous, you are wonderful and special and think of it as that  you will also be with your friends for longer, rather that just at weekends.

      You will be ok Jemma, just think in those terms and no matter what the school says, you will be just fine.

      Good luck and just go for it.

      Best wishes and let us know how you get on.

      Take care

    • personal20 personal20 jemstone49

      Of course we wish you luck.

      From now on your schooling and studies will be amazing, just try your best jemma and you will find that things will work out.  Any issues you face try to treat them as a challenge to be overcome, rather than something to get upset about.  Your friends are there for you, just as much as you are there for them.  They will support you if you reach out to them.

      Go for it!

    • jemstone49 jemstone49 personal20

      thanks so much it went ok and there are special days untill the end of the term, so i'll either go in tomorrow or monday and probably wednesday

      thanks so much 

      i'm getting my blood test results by monday hopefully and i hope there clear as it will be one thing ruled out but i also hope they're not as then we will have the issue, if you know what i mean?

      thanks again


    • personal20 personal20 jemstone49

      Thats great jemma!  Just let us know how you get on and I understand what you mean about the blood test results.

      Try to stay positive and now things are looking better at school, just keep looking forward at how great things will be, dont look back.

      Best wishes and take care

  • jemstone49 jemstone49

    HI all,

    got my blood test results today and they are pretty normal but one marker is high antinuclear antibody-the auto immune system so my consultant will do them again after three months on pizotifen which i will hopefully start on friday!

    does anyone have any idea what this means or had this themselves?

    many thanks,


    • personal20 personal20 jemstone49

      Hi Jemma.

      Well I did some research and it means that antinuclear antibody means that some of your cells are attacking each other and the consultant will do another test like you say in 3 months, to see if you have any change.

      Hopefully the pizotifen, when you start it, will deal with this morning migraine you are getting.  My advice is to take it around 7 at night, if you leave it too late, you will be very drousy during the day.

      Good luck jemma and take care.

      Best wishes.  Keep in touch let us know how the pizotifen goes.

  • jemstone49 jemstone49

    i have a GP appointment later but i wanted to mention it here first, 

    previously i said i wasn't  getting as much sleep as usual but recently i've only been  getting 5 to 6 when normally i get about 9 however  last night i just couldn't get off

    i've tried: 

    hot water bottles 

    cold flannels

    forehead cooling strips







    gripping a stress ball


    being read to too

    having a hot bath

    with the light on

    with the light off

    listening to music

    listening to calming sleepy music

    doing calligraphy

    lying on my font, sides back

    doing the above with and with out pillows

    looking out the window

    taking paracetamol

    taing iburprofen

    thats it, does anyone have any advice but not pills as my GP doesn't seem to want me to take meds

    thanks Jemma

    i'd be greatful for any reply as i am knackered and i think i need a  nap

    thanks again


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