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Migraines

illihorillihor Posts: 283
edited 3. Oct 2011, 18:22 in My Child Has Arthritis
Kayleigh has been having Migraines on and off for ages now. At first she just used to say her head hurt so I'm guessing it was just headaches then after easter she started complaining more and ibuprofen and/or paracetamol wasn't touching them. Then on holiday she had a 5 day solid migraine it was hell for her. We were at butlins and she obviously wanted to join in with everyone else but it hurt her so much.

Then this past week (she's had them since on and off not one that long again but they last at least 24 hours) She had one monday and tuesday but I'm guessing not that bad (she's a very tough cookie hardly complains of pain) wednesday she was fine Thursday she got sent home from school at 11.30 with a really bad one. was fine again friday so went back to school.

I've got a gp appointment for thursday to discuss this and I will be calling up rhuemy nurse as they reduced her MTX over the hols from 10 down to 5 and her jaw has been hurting her so much she's hardly eating again :( her wrists and ankles are also hurting but i can't see any swollen areas apart from possibly a slight bit in her right wrist. She is still on Etanercept. Could any of these drugs be causing her migraines or is a bit more touch of bad luck for her and just one of those things.

She will complain of a belly ache (which I have to say I don't take much notice of as if she doesn't want to do something she will say it then aswell lol) then within 2 hours her head is throbbing like on Thursday, her TA said her eyes looked really sunken and she just kept her eyes closed and had her head on the table in the reading corner and didn't want to do ANYTHING which is not her at all :(

Sorry I'm rambling again oops
Michelle

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh lordy lordy Michelle, we ain't docs and you weren't rambling. It's yonks since I was on enbrel (without meth) - is there a leaflet with your enbrel? What does that say? I know that headaches are a common side effect with some meds - what makes you think they are migraines? I had severe headaches when I began leflunomide but I wouldn't term them migraine because I didn't have flashing lights, or nausea, or visual disturbances etc. Poor Kayleigh, I think you need to ring your hospital and check with them. I hope she improves soon and that you are as OK as you can be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    I'm guessing they are migraines as she complains of belly aches and then wants a bowl as she says she feels sick (not every time but 95% of them) and she says "It makes me blink a lot" lol I'm guessing at 5 she can't quite figure out that it's the light hurting her after a bit of a talk and trying different things I know the light hurts her eyes (even though she will say no as she associates stabbing pain like a cut to be hurting she just says she doesn't like it bless her). Ibuprofen and paracetamol don't touch these episodes unlike normal headaches she has.

    She will say her head really bad and her eyes just don't look right and look almost sunken in. Her TA at school said the same thing on Thursday before sending her home, she also can't seem to distinguish exactly where the pain in her head is, she also ran a temp with the last lot including the one on holiday not sure if that's got anything to do with it. Wasn't a mega high temp just a raised one.

    I've been trying to get through to the hospital all day but no one is answering the phone and also the answer phone isn't on which is really odd. Like I said I will see gp on Thursday as when i mentioned the bad headaches to consultant in August she kinda dismissed it as if it was nothing (this was the consultant from bristol which i was very surprised about) I am trying to get a hold of our consultant down here but they are hard to get in contact with.

    Michelle
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh Michelle, I am sorry to hear that. You need proper help with this, keep trying the hospital but failing that go to the GP. I am now fuzzy with tiredness, :oops: I am so sorry, but I will keep looking in for an update. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • worriedmumworriedmum Posts: 79
    edited 30. Nov -1, 00:00
    Hi Michelle,
    Long time no chat- -
    Sorry Kayleigh is getting these porblems. First thing i though is what is her Uveitis like? Has she been checked recently. Freya is in a chronic eveitis flare (over a year) and on loads of medsdrops etc but she also has sore eyes and occasional headaches and I can't help thinking there may be a connection.
    I'm sure you're on top of this but wanted to mention it jst in case.
    Let me know what GP says.
    Best of lucj
    Sam. x
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    She was checked for her eyes on the second day of school this term and everything's ok there, thankfully although I will have to keep VERY on top of it as it was 6 months gap so know she's due before xmas.

    Thanks for your thoughts and will def let you all know how things go on Thursday and if I ever get through to the nurses at hossie.

    Michelle
  • frogmortonfrogmorton Posts: 25,580 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Michelle

    another Mum here but a Mum With arthritis sorry to interrupt but l have a daughter who has pretty evil migraines and just wanted to offer my sympathy. Hope it is a medication causing it, but of course the jaw pain could be too. She might be blinking due to blurred vision mightn't she and lots of kids say they have belly ache when they have a migraine and are too young to find the right words :sad:

    (Just as a thought one of my other girls gets belly ache with nurofen too.)

    I hope all has gone/goes well for you and she :smile:

    Love

    Toni xx
    Love

    Toni xxx
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    Thanks everyone. Well dr has decided to try her with sudafed :shock:

    The theory being that as she's due to have her adenoids out they think this is causing them. Hmmmm I'm not convinced there AT ALL.

    They want to try this for 2 weeks then go back, although it was a if it works then keep giving it but never did a repeat script for it so will have to go back anyway. Might try and see a different dr as she had to go out and speak with another one :roll:

    I've spoken with our rheumy nurse who is trying to get in contact with her consultant asap for us as Kayleigh had a big flare up this morning. Her jaw was killing her and her right hand/wrist was swollen. Her index finger was very red and hot to touch and she could hardly bend it :( They told me at school she did no writing today as it hurt to much although she was running around ok even though her knees were hurting :???:

    Kayleigh does get belly aches with ibuprofen but she says these belly aches are different, she doesn't say more than that, and her jaw has only been hurting her past couple of weeks and migraines been since april at least possibly sooner so can't say it's that either.

    I mentioned the blinking and the not liking lights to them but think she just had a one track mind and didn't really want to go to deeply into things especially when i mentioned she's on mtx and etanercept.

    Hopefully our consultant will call back soon and make an appointment to see her then I will go everything then with her including her headaches as i wasn't convinced this gp new what she was doing. We were in the half an hour but she seemed very unsure of herself probs didn't help with kayleigh not wanting to cooperate at all oops/

    Michelle
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    Consultant is bringing Kayleigh's appointment forward to 18th October as she agrees it's not good her having so many pains and aches this soon after mtx was reduced.

    Got to go back to GP about her migraines before then so we shall see what's said, typically she hasn't had any headaches but she looked like she was brewing one tonight so we shall see :(

    Michelle
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