Re: Re: Re: how am i supposed to feel?
2/12/00 2:20 AM
Suzie, I too have CAH and am 40 yrs old. I know for me personally I had HORRIBLE headaches for years before the CAH was diagnosed. I had symptoms of CAH from birth but it wasn't until I had the precocious puberty that things really seemed wrong. I wasn't diagnosed until my late teens (never had periods until diagnosed at 19) Anyway, for me the headaches go hand in hand with badly treated, or untreated CAH. I have had several endo's throughout the years but it wasn't until I had several adrenal crises (which my GP thought were Meningitis) that I got my dosage raised. I sent for chart notes recently from all of the different endos and found that my 17-OHP was over 2220 at age 35. It's a wonder I didn't die from the misdiagnoses from my general practitioner (imagine meningitis!) That was when I was on .25 a day of Dexamethasone! I have found for me that my headaches seem to come on in the afternoon, when I've had a full day, as the Dex. is starting to wear off (I take it when I go to bed about 10:00 PM). Now that I know the headache for me means that my cortisol is getting really low, I just take extra Dex and within an hour my headache is gone. I also know by the type of headache (cortisol related headaches for me are at the top of the back of my neck by the base of my skull) You mentioned that your levels were high too. I don't know how old you are, but an adult should be somewhere between 0 and 300, from what I've heard. Ask your endo what your levels of 17-OHProgesterone actually are. Maybe your dose needs to be raised. Susan A. P.S. Where are your headaches located? What time of day do you get them? Some folks wake up with cortisol-related headaches. (my brother is one of them)
Susan A.
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