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Still no relief
I have copied my post from the other day.  I am getting very frustrated because my daughter's headache is no better if not worse.  I told the doctor's this morning that the pain is definately getting worse with activity.  She will get up for 30 minutes to walk around or go to the play room and she will all of a sudden start crying with pain, get extremely dizzy and want to go back to the room.  She will come back and sleep for hours and still wake up with a headache.  They did order a MRI to be done sometime today.  Does anyone have any other ideas I can suggest for them to explore?  This has been over 2 weeks with the same headache with little or no releif.  They have suggested it is psycological, but I know my child.  She loses all color when these episodes happen with very little activity and the fatigue is terrible.  I am just very frustrated!  Any suggestions?????

Just a question..my daughter is 12 years old and has been in the hospital for 5 days with a migriane headache that has lasted 10 days now or at least what they are telling me is a migraine headache.  She has suffered from migraine headaches since she was 7 years old.  She keeps saaying that it feels different.  Normally her migraines are at the front of her head and typically last a few hours and then she vommits and it is over.  This one is on the top of her head and in the back and she is nauseated but has not vommited.  She has been on dhe for 5 days now and they have added vitamin b and magnesium now.  She has also been suffering over the last few months with joint pain and swelling.  She had a rhematological work up and revealed a positive ana of 1:640 and a positive P- Anka.  The rhematologist seems to think these are not significant, but given the fact I have lupus and took years for a diagnosis, I am not convinced.  They have had a terrible time with her IV's as well.  She keeps getting flybitis in her veins and they have to keep changing the IV sites.  They have had a terrible time finding good veins.  She is on her 3rd site now and it took 3 sticks from the IV special team to get this one.  Anyway, my question is Could this be some sort of vascular headache?  They keep saying they think her blood vessels are contricted.  They did a ct last week of her head and didn't find anything.  Should I be pushing for a MRI or other tests?  I am just feeling helpless watching her suffer.  She has had trouble in the past with infections of the ear, lungs and sinuses.  She has had polyps in her sinuses removed twice, a mastoidectomy and multiple pnemonias in the past.  I don't know if that is significant, but I thought I would mention it.  Any advise would be helpful.  Thanks!
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Avatar universal
I've had migraines for 15 years.They have ranged from irritating but manageable to knock me on my butt wanna die kind of migraines.I've had them last a day to 15 days straight.I don't know what doctors think about migraine meds for kids but I take imitrex and for the really bad ones I take fiornal with codeine.After years of suffering and this last year was the worst I decided to try some other things.My husbands gramma has done reflexology for 25 years and I started going to her for treatments.They helped alot because they are so relaxing.I also started getting accupuncture.I think it has done the most good.I use to wake up every morning with a migraine.My upper back hurt and I just wanted to cry.I found a medical doctor who does it because that is the only way my insurance would pay and I'm thrilled with the results.I go every 2 to 3 weeks.I get 8 needles on my upper back and 8 needles on my lower back.Then he hooks them up to some things that send very mild electrical charges into my body.It feels like a very light tapping.I still have to take my meds now and again but I haven't suffered like I was earlier in the year.I can go days without one now whereas before it was on a daily basis.I hope your daughter can find relief because I know that she can't have a quality life while she suffers these headaches.Give her a big hug from another mom.
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She takes topamax daily, she also has imitrex and migrinol for immediate relief.  She has been hospitalized for 8 days now.  They have tried DHE for 5 days, magnesium and Riboflavin, they have tried zanaflex and various other meds in combination with tylenol and motrin.  The headache is worse than ever.  It gets worse when she sits or stands.  It is horrible for her.
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Gawd,I am so sorry for both of you.I don't know what DHE is though.I know this is going to sound weird but if there is any way you can get a book on reflexology it will have pictures in it and there are spots on your feet that are directly connected to headaches.You could do it yourself.I got a book and when I can talk my husband or son into it they will massage the areas for me.I guess since shes in the hospital they are doing everything medical.Massage certainly couldn't hurt.It might help relax her at any rate.Please update on here so I know how she's doing.A big hug to you too.
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If you're on the forum I'm just wondering how your daughter is doing?
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Took her for a second opinion because she was not improving.  The child neurologist said she has postural orthostetic tachachardia.  (sorry for the spelling)  She has had to lay down flat on her back with her feet elevated and we are giving her sodium tablets.  Seems to be working.  Now that we know what it is, we just have to find the cause.  Thanks for remembering us!
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How strange that your daughter had sinus surgery and now has terrible migraines....it sounds similar to my 16 year old son and he has had the same migraine for over 3 months - with numbness in the arms and legs....after many c-scans and MRI's we still don't have an answer.  Now he is dealing with severe depression from the pain.
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I've never heard of her diagnosis.I'm going to look it up to understand it.I'm glad she is getting some relief.If you click on my name you can do a "friend request".I'd love to stay in touch if you're interested.That way we can just message each other on occasion.Many hugs to you both.
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