Migraines and PANDAS?

[browneyesmom]

Ever since dd12 was hospitalized twice this past fall with severe, relentless migraines, I've wondered if there is a link. They started about the same time she had another strep infection and started her third severe decline into another exacerbation.

 

We know that migraines are an inflammation of the blood vessels in the brain and PANDAS is an inflammation of the basal ganglia... not exactly the same thing, of course, but that's a lot of inflammation going on in one kids brain.

 

I'm starting to see others posting about their kids having migraines, so now I'm wondering if there is a link... please see poll.

[momcap]

I voted no, my PANS DS8 does not get migraines, or complain of headaches at all. He has lyme and chronic strep. When he gets an acute strep infection (fever and positive throat swab), he complains that his brain feels weird, feels cold, feels like it is shivering, etc. But it doesn't hurt. ???

 

DS6, who has some PANS symptoms (but not a PANS diagnosis), had chronic migraines that I always associated with strep. I wondered if he had strep in his sinuses. But that's just me guessing. He was a strep carrier and ALWAYS swabbed positive, along with elevated ASO. He has lyme, which could also have caused the migraines. Within a few weeks of starting combo high dose abx for lyme, his "migraines" went away. But he also finally cleared the strep and his ASO came back to normal. He's the only one of my kids who finally has a normal ASO since they all got scarlet fever 3 years ago! He hasn't had a migraine in 6 months. So I don't know if his trigger was strep, lyme, or something else infectious. All I know for sure is combo abx cleared his migraines. Yay!

[peglem]

I chose yes, other. We are not sure of the infectious trigger. My daughter chronically tests positive for strep on the rapid, but has never had a culture come back positive. We are currently looking for other triggers, which have mostly not been tested for. She seems to have something chronic that keeps coming back. Her migraines go away w/ a course of clindamycin. I'm told I can't keep her on clinda forever, but perhaps I can get the doc to rx a longer course.

[oivay]

My daughter was always complaining of severe headaches, which apparently can be a symptom of strep.

 

They started when she was about 5, and one was so severe they called me up to pick her up from daycare as she had told them it felt like her head was about to break. We went to an allergist/immunologist the immediate care doctor referred us to, and she said she had vasomotor rhinitis, which was resulting in the severe headaches. Immediate care doctor's idea was lyme, but at the time, all the lyme tests were negative.

 

She always complained of headaches, so it was hard to associate them with the Pandas episodes.

She had some pretty severe ones while she was doing the PEX too, and for about 3 weeks afterward. She says she still gets them once in a while, but they don't seem anywhere as bad as they were.

 

As far as the strep/cultures etc., our neuro said that the fact that her titers weren't rising in the face of documented strep suggested a "selective immunodeficiency for strep" as one time her GP actually called up the neuro and said "never before in my life have I seen such rapid and such positive results from a rapid strep test." (In about a minute, the positive stripe was all the way to the top of the strip.) Within a week, the chorea started again. Again, here titers never really rose, and for a while there, we were having at least one blood test a month.

[browneyesmom]

Thanks for the input so far... bumping for anyone else who wants to take part.

[ThinkGutBacteria]

So the daughters are yes and the sons no?

[rowingmom]

I have a daughter. No migraines, IND lyme, positive bartonella, symptoms flare with strep infection.

[tpotter]

Ever since dd12 was hospitalized twice this past fall with severe, relentless migraines, I've wondered if there is a link. They started about the same time she had another strep infection and started her third severe decline into another exacerbation.

 

We know that migraines are an inflammation of the blood vessels in the brain and PANDAS is an inflammation of the basal ganglia... not exactly the same thing, of course, but that's a lot of inflammation going on in one kids brain.

 

I'm starting to see others posting about their kids having migraines, so now I'm wondering if there is a link... please see poll.

 

 

Have you checked for viruses like Epstein Barr? They can cause terrible headaches, and many of our kids don't clear them easily. One of my kids gets terrible headaches, and the other doesn't. But, since tx, the headaches aren't as bad.

[MamaOnAMission]

My girl would see double get a severe headache and vomit every time. Milk and antibiotics set them off and I'm not sure why. Since being on 6000 units d3 and full dose bactrim/doryx there gone. Not sure what stopped them. Her sore ankles and knees are gone too. Vitamin D3 can help with this and so can antibiotics for Lyme/Bartonella so I'm really not sure.