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2 month severe headache, mult tentative diagnoses, no relief

My daughter has had a severe headache for 2 and 1/2 months. Her pain has changed throughout the trial, but is all over, sometimes biting in places etc. She has had multiple tests, many prescriptions, and even a hospitalization. The CTScan, MRI, white blood count, etc. were all clear. They did end up draining excess spinal fluid in the hospital (b4 Christmas). We were hopeful that she would find relief after this. Needless to say since I'm posting this, she hasn't found relief - in fact seems that same or worse. She has never quite fit the symptoms of either the migraine or the excess spinal fluid, so has been a bit of a mystery. They almost didn't do the LP because she didn't fit the symptoms - I actually asked to get it done while we were in the hospital because we were having a hard time getting appointments for other tests. She hasn't really responded very well to medications - we've only go her to a 4 or 5 / 10 on the pain scale with some (Frova). Now we are waiting to see if a preventative (Topomax) will help, but being very slow acting, it's frustrating. Her pain is great and now drug side effects are adding up. Any ideas or help? We haven't been able to talk to anyone who has a similar problem, especially the duration of this.

Thanks, Marla

Answers:


How old is she?She turned 13 right after Christmas. Hormones definitely have been mentioned, she has, however, been menstrating since she was 10. She has been very regular and seemingly normal. The headaches started 1 week after her cycle on a very boring, normal, stay-at-home weekend.It's very rare for a 13-year old to have treatment resistant headaches and have to go on preventive Topamax treatment, which is usually reserved for adults. If Topamax was started, the definitive diagnosis must be migraine. She has a short history however, only 2.5 months.

I'm happy that the MRI and CSF (spinal fluid) were clear. That's a long way to excluding serious causes.

I'd like to see her get a second opinion from a pediatric neurologist, or a headache specialist.

You did not describe the symptoms other than mentioning headache. Can you give a specific description of the symptoms, what provokes it, what helps, what time of day is worst, does she wake up to a headache, is there nausea, vomiting, visual disturbances, the whole storyMy daughter's (she's 13, but 5'8", 165 lbs) symptoms have been primarily just the severe headache. At the very beginning she was a little bit nauseous, but never threw up. She was dizzy when doing any more than a short walk. She had a very thorough eye check up and her eye health was good. It didn't seem to be worse in the morning, definitely worse after school (back then). The headache has changed over the two months, but never got below a 4 out of 10 on pain scale. The pain has changed from front and back, to top to all over. At one point it would "bite" her above one ear or the other. Initially (Nov. 7)they gave her vicodan and encouraged her to sleep it off, but that didn't seem to change the pain much. That next week (Nov.13) they prescribed butalbital, amoxicillin (just in case, even though white count good), and 2 frova's (much less strength than later). This didn't help(I think they thought she'd wake up w/o the headache). When she still was suffering Nov. 20(getting worse over all) the family practice tried Propanolol, and Butalbital. The best appt time for a pediatric neurologist they could find in a 4 hour drive was on Dec. 5. She woke up the next day with the biting pain behind her ear. I was told to take her to the ER if we couldn't wait until the appt on the 5th, but they wouldn't do anything for her (I wanted a MRI done). They gave her Cataflam, but it didn't seem to help much. Towards the end of our wait for the appt, she had an 8/10 for most of the days. The biting continued and her eyes did burn one day. Finally the neurologist gave us hope with a plan of action. We tried extensive doses of Frova (2 a day for 3 days, then 1 for 3) along with Prochorperazine after 3 days, 3 a day for 3 days.(taper?) This didn't seem to help much, but she had some problems using her writing hand. They decided to hospitalize her for a DHT (or is it DHE). She went in with the worst headache 9/10, could hardly walk. The treatment didn't have great results, maybe brought it down to a 5. While in the hospital they did the MRI and then finally, with my encouraging, the LP, where her pressure was a 31 and they drained it to a 14. I guess she really didn't seem to have the symptoms of a pressure headache, but did have high pressure. We were hopeful that her headache would taper off. She was put on Diamox, and then Propanolal (Jan. 2) when her headache remained, they switched it to Topomax when she started having very sharp stomach pains. She also has totally lost her appetite.

The Frova the second time around helped for half a day, the next day it didn't seem to help. At times it seems that ibprofren then tylenol overlapping worked just as well. Right now nothing seems to take the edge off. It is more like a 6-8 all day, from the time she wakes up.

She hasn't been too affected by light (unless really bright) interestingly enough, but sounds and smells really bother her. She has trouble reading. Car rides seem to bother her.

We had such a hard time getting an appt to a neurologist that I'm not sure even how to go about getting a second opinion.