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I’m looking for some help for my daughter. She has EDS, POTS, Mast cell activation disorder, – etc etc. Lately on top of all the other symptoms, she has this pretty constant headache that is driving her crazy – wakes up with in the morning. It doesn’t seem to be a diamox headache, because no relief when she takes diamox. It does start at the back of her neck sometimes, but is in her temples also. It’s been going on for about 2 weeks, fairly constant. sometimes seems worse when she stands up.
She tried amitriptyline – it had helped with headaches before but isn’t helping this time. She’s on 40 mg. at night.
Imitrex does help, but needs it every 3-4 hours.
Anyone experienced this or have any answers or advice?
Can you help us with a summary of her medications? That may help. Hang in…
Oh, dlvan, what is her CO2 level (in her blood)? Diamox won’t work if the serum CO2 dips below 22. If that is OK, and Diamox is STILL not working, then it’s time for the once over from your doctor! We can’t assume everything is from EDS/POTS — let’s not forget that! We also tend to develop aneurysms (yikes), vascular abnormalities of all types, non-communicating hydrocephalus (Diamox likely won’t help that very much), migraines, etc. Will you keep us posted? 😉
Has she tried sleeping with a neck brace on? It helps me. I get horrible headaches.
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