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wisdom_seeker

options for constant headache since a flare?

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My DS16 has had a constant, unpleasant headache (+ sound hypersensitivity + other symptoms) since an infection and flare 6+ weeks ago. He's on azithromycin, Aleve (NSAID) round the clock, and anti-anxiety meds. Had a steroid burst when he got sick, which helped with many symptoms, got another flare 3 wks ago from the stress of start of school -- and that flare has not gotten better.

 

Still, he's not had such a constant headache in previous flares. It's different than sinusitis headaches. He says it reminds him most of post-concussion headache he used to get. Any ideas what's going on?

 

Constant pain is draining, demoralizing. Since he's already on the NSAID, turmeric, ginger and Neurontin as antiinflammatories, is there anything else I can do -- till we do IVIG?

 

 

 

 

 

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My DD14 uses immitrex after ivig for the migraine and it works.

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Boysrlove24, I think that DS is low on ferritin; he usually is. No idea about the CoQ10, but I bough a supplement for I'd been recommended it in the past. How would these be connected to headaches?

 

Thesuzie, interesting - his allergist just suggested that this might be an atypical migraine, and suggested a trial of imitrex or elavil. It's not one sided, and it keeps going, but the sound hypersensitivity and worse balance issues make it suspicious, don't they?

 

Thanks.

WS

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Boysrlove24, I think that DS is low on ferritin; he usually is. No idea about the CoQ10, but I bough a supplement for I'd been recommended it in the past. How would these be connected to headaches?

I have read in a number of places that low ferritin causes headaches...not sure if its true for your son but it certainly was for my son. We started supplementing iron daily and he hasn't complained of a headache for a while. Just Google low ferritin and headaches and you may see some stuff about low iron being the cause of a few symptoms one of which is headaches. To clarify though he was not getting migraine type headaches that were debilitating...his were more irritating and bothersome.

 

I don't think CoQ10 has anything to do with headaches it was just an interesting observation for us that his CoQ10 was also really low but had been normal about 4 months prior...so we've started supplementing that as well.

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What about alternating ibuprophen and tylenol and dropoing the aleve--for a trial? Also, if Aleve helps some, is it possible to safely raise the dose a bit more to see if you get better coverage?

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Completely random thought regarding the sound sensitivity: my ds has sound sensitivity and red ears along with OCD. I noticed it was a little worse following a recent sickness (we are in the middle of IVIg/zith) and I noticed the sound sensitivity was helped a tad by detox for the liver (broccomax in the am, NAC in the pm). My theory is that some sort of infection or herx from infection cause his sound sensitivity symptoms.

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My son lived with a constant headache for several years and tried many medications. BTW Neurotin, made his symptoms worse. My son also had severe scalp which was most likely making his headache worse. My son has also had IVIG and Plasma Exchange. Be sure to get the premeds before IVIG if you will be trying this treatment. My son did not do well with IVIG it made his headache worse. The only thing that helped lower my son's headache for an 8 to 6 pain level was ER Namenda 14 g twice a day.However, his headache did not go away until he was put on 3mg of Low Dose Naltrexone. It took 8 weeks for it to work but it was sure worth the wait. His headache is gone and he no longer has scalp pain or hypersensitive skin issues. Low Dose Naltrexone works with the immune system and is used to treat Chronic Regional Pain Syndrome.

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