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In late January my 14 year old daughter very suddenly

started having what we are...
In late January my 14 year old daughter very suddenly started having what we are told are cluster migraines AND at the exact same moment she also began to get migraine headaches. Since the first episode her symptoms have never been exactly the same for each "headache". She started out with loss temporary loss of vision which changed to black spots and then snow like on a tv but that is gone now. She used to feel the pain behind her eyes or like someon was crushing her eyeballs then it felt like some was pulling them from behind and now that symptom is gone also. She also felt pain in her joints and was starting to sleep for 12-16 hours a night when she was not taking any meds at all but that's gone now also. The first couple headaches she she had the pain down her arm to her fingers and down her leg to her toes. Her fingers and toes hurt so bad that when we looked at them they were almost purple and they were swollen. The swelling and purple part is gone. What's the same is pain in her spine, neck arm, hand, side-ribs-hip,leg and foot. She will frequently get a feeling that her skin is hypersensitive. Touching her or breathing on her skin feels like sandpaper. When she feels it coming she sometimes says that all her teeth hurt like she had brain freeze. The pain has all but once been on her left side. She has never once been sick to her stomach or felt nausaed. Although she did have really strong hunger pains after the worst headachs and she had a strong craving for pineapple. What's new is that she is getting these sudden symptoms associated with the cluster headaches without the actual clusterhaches now. Just the sudden pain in her back down her arm,side,leg and foot. Plus she has noticed that when sudden pain hits her hand now she suffers temporary paralysis in her hand. Pain but she can't move it. All of these last about 15-45 minutes. At first oxygen used to help the cluster headaches but now that she has the everything else but the actual clusterhaches the oxygen doesn't help anymore. She has suffered with so much pain and my husband and I have sat with her and cried with her. She was given Imetrex in pill form and nasal sprays but it had NO affect on the headaches at all. She has been on topamax-50mg at night for 2 months now and the first couple weeks she was seemed fine but she has not been fine the last 6 weeks. She has had CT's and MRI's of her head which all came out perfect. She had xrays of her back and they were ok also. All blood work has been perfect too. Thyroid, sugars, vitamin levels are all ok. I am wondering if these are really migraines now. Do you think these are cluster migraines or migraines?
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Answered in 3 hours by:
4/2/2013
dr-megasmart
dr-megasmart, Board Certified Physician
Category: Neurology
Satisfied Customers: 15
Experience: Board-certified neurologist with 21 years experience. Advanced training in epilepsy, stroke, and critical care neurology
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dr-megasmart :

Hi, I'm so sorry to hear of your daughter's symptoms. Cluster headaches are often misunderstood - these headaches are very different from migraines in that that they tend to be described as far worse, with sharp stabbing pains often involving the eyes, associated with tearing and redness in the eyes, and stuffy nose. Unlike migraines, patients with cluster headaches are typically restless and cannot sit or lie down to help resolve the headaches. So based upon the description of your daughter's symptoms she may not have cluster headaches. With respect to the other symptoms she's been having these are not typical of migraine or any other form of headache for that matter. Instead, what you've described fits a pattern suggestive of a rheumatologic disorder, such as lupus or Lyme disease (not sure if she had rheumatologic blood tests done such as Lyme titers (WB, PCR) or ANA, dsDNA, ESR, CRP, SS-A/B, LAC, ACL, etc - don't worry about what these stand for but I would suggest talking to her pediatrician to be sure these were done. I would also suggest having your daughter evaluated by a rheumatologist. Her headaches, as such, may be a symptom of a rheumatologic disorder as opposed to the cause of her other complaints. Hope this info helps! Please keep me informed.

Customer: Thank you for your quick response and for listening. Unfortunately our pediatrician has not taken the time with my daughter that she should have because my mother in la
Customer: Thank you for your quick and informative response. Our pediatrician has cant seem to move past a diagnosis of migraines because the run on my husbands side of the family. I think this may have stated out as a migraine but I don't think it is any more but I can't get anyone to listen to me. The initial headache was a sharp stabbing pain on her temple and her eye. She hit the ground and it lasted about 15 to 30 mins. It hard to say since time was a blur. When it was done both her eyes were beet red! She did not and never has had any sinus issues during one of these episodes. No watery eyes and never felt sick to her tummy. Last night she had an episode with no actual headache at the time. It came on suddenly, pain down her arm into her hand and she could NOT move her hand or her fingers but they hurt her a lot! She said her back bone and neck bone her really bad. Then the pain moved down her side. She said it felt like a tone of bricks were sitting in her ribs then her hip and down her leg to her foot and the soul of her foot. It's intense for 20 or so minutes. She feels like she is going to pass out from the pain and she lays on the floor. She crys and screams when it peeks and crys some more.We give her the oxygen which doesn't seem to help but we assume it doesn't hurt. When she can get up on her own she goes to bed. In the morning she feels awful. She has a headache but not a migraine. The soul of her foot hurts and she feels sore like she was beat up. This is not a migraine to me! My mother in law does have in auto immune disorder that she didn't accrue until she was near 60 years old,the name of it escapes me right now. I do remember reading about it and its said that this type of auto immune is only in women over 50 years age. We did lose one of our daughters very suddenly 3 years ago to Aplastic Anemia just days after her 20 birthday. Which I have recently learn maybe associated with an undiagnosed autoimmune disorder. So I am very concerned. Does her episode from last night seem neurological to you? Her Neurologist says the weird symptoms are from the places in her brain where she is having the migraines but its not sitting right with my mom meter.
dr-megasmart :

Hi, thanks for the additional info. I respectfully ***** ***** the other neurologist's diagnosis - your daughter's symptoms are way out of proportion to her headaches. Having said that, she really needs to have a rheumatologic evaluation. Should this specialist not find anything wrong then I would consider headaches as the primary cause. Out of curiosity, since your daughter is 14, when did she start having her menses because another disorder to consider is endometriosis and polycystic ovarian syndrome - I would recommend bouncing these symptoms off her gynecologist (if she has one - if not get one ASAP). Another possibility is an endocrinologist to check for hormonal imbalance but my hunch is it's going to be either rheumatologic or gynecologic.

Customer: Well, she start on the last day of October but did not have a period in December. She did have one in January and February but not March. Interesting that you say PCOS because I have it and it runs on my side of the family. Most of the women on my mothers side have it and I had been worried about it with her. What symptoms make you wonder about PCOS and endometriosis? She does seem hormonal to me and I raised 4 girls. I was raised by all women with all sisters so I'm pretty good at picking up on hormones. Ha ha
Customer: Sorry, auto correct changed my response. I wanted to say she did NOT seem hormonal at the time.
dr-megasmart :

Hi, endometriosis is often misunderstood, with the typical thinking being that symptoms are confined entiredly to the female parts whereas this condition can be much more widespread, and cause be the cause of your daughter's headaches. Speak to her gynecologist - at the very least she'll need a pelvic ultrasound. Based upon the additional info you provided my diagnosis is endometriosis with neurologic symptoms rather than headaches - if this gynecologic eval proves to be normal then insist on the pediatrician referring her to a rheumatologist. In my opinion it's going to be one or the other of these two disorders. Please keep me informed should your daughter get these additional evaluations.

dr-megasmart :

Hi, just thinking about your daughter's case a bit further, I would urge you to contact her gynecologist and have her seen ASAP, preferrably today or tomorrow.

Customer: Wow! Ok thank you
dr-megasmart :

Hi, please keep me informed. Unlike your family, I'm from a family of nothing but boys, including my two sons (OK, my sister is a mutant). Good luck!

Customer: Ha ha, yes I sure will keep you informed. Thank you for all your help. I really appreciate your help.
dr-megasmart :

You're welcome!

dr-megasmart
dr-megasmart, Board Certified Physician
Category: Neurology
Satisfied Customers: 15
Experience: Board-certified neurologist with 21 years experience. Advanced training in epilepsy, stroke, and critical care neurology
Verified
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Customer reply replied 4 years ago
I realize now that I was trying to give you so much information that I missed something that seems important. So far my daughter has only had these so called migraine-cluster migraine episodes in the late afternoon and evening. Only a few times has she had one durning school hours. They mostly seem to happen right before bed. After she started the meds meds she had them less often. I had her try oil pulling 2 times a day for 3 weeks and she did not have a single one during that time but she got lazy and stopped. Thats when they returned as I explained in my first note. What do you think about Hemiplegic Migraine Headaches?
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dr-megasmart
dr-megasmart
dr-megasmart, Board Certified Physician
Category: Neurology
Satisfied Customers: 15
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Experience: Board-certified neurologist with 21 years experience. Advanced training in epilepsy, stroke, and critical care neurology

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