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Chronic severe nocturnal hypnic headaches
Sleep Health | Last Active: Sep 26, 2023 | Replies (239)Comment receiving replies
Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms are definitely similar. Have you had any success with prednisone treatment? I meant to tell you I had a Dr. (mayo trained and Rheumatologist) who once treated me with IV steroids as I
was in the middle of a severe migraine attack. It is considered recue or breakthrough treatment and it worked, He had an infusion center and fortunately it was easily accessible. I do think there is a possible link in having adrenal fatigue (hypoadrenia) and hormone levels possibly affecting sleep hormones etc... I wonder if anyone in this group takes Spironolactone, (I'm on 100mg for Bioidentical HRT - fluid retention) Could there be any problem there? Also- i drink a lot of water daily. I don't drink coffee or tea or really anything other than water. I have a dry mouth related to RA and I even worry if I'm drinking too much wter?? I just wonder if migraine sufferers get in a cycle of adrenal stress from med side effects and lack of sleep, (poor sleep hygeine etc..) My gyno (hormone specialist) actually started me on a very low dose of prednisone years a go to see if it helped w inflamatory issues/migraines but it was too hard on my gut) I hope this treatment gives you some relief. It would be wonderful if it does. I know this time of year is tough on everyone- it makes eveything crazier as life and schedules ramp up. My prayer has become "please God-don't let me have a headache tonight". Blessings to all, Lulu💓
Replies to "Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms..."
@lulu1962 I took Spironolactone prior to my liver transplant along with another diuretic (I gained 35 pounds of fluid in 6 weeks). I had no problem from it and I was headache prone, but the headaches (migraines) ended with menopause, thankfully, so that is possibly why I didn’t have a problem. Interestingly, my migraines were almost all left sided also. Occasionally, when one was winding down, it would suddenly switch to the right side!
I can almost feel your pain, I hope you find some relief soon. That’s disappointing that the best migraine medications don’t help.
JK
@lulu1962 @lisalucier - I started the Prednisone taper on 11 December. 42 tabs 10mg. I'll complete dosing on 22 December. Prior to starting the Prednisone I think the other meds had thrown off the timing of the headaches, so rather than waking me at a specific time, they were more random and not quite as severe, but was feeling generally achy along with a constant feeling of shakiness. I have tolerated Prednisone pretty well in the past, when taken for extreme cases of poison ivy and a lengthy battle with hives following a surgery. This round, after day 2, the headaches completely ceased and I've felt much better with the exception of the shakiness, a little fluid retention and elevated blood pressure. I expect the fluid retention and blood pressure will return to normal after I complete the dosage and, if true to form, I expect a week or 2 of feeling generally lousy while my body takes back over to produce cortisol. I'll keep you posted on what effect it has on the Hypnic Headaches. So far so good. @lulu1962, have you tried any caffeine or melatonin prior to sleeping yet? They worked more often than not for preventing the headache for me...at least while sleeping. Also, I've never taken Spironolactone. Prayers for us all to regain happy healthy lives.
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Hi, @lulu1962 - I happen to take spirinolactone, but I don't experience nocturnal hypnic headaches (or other type of headache). Here is some information on the side effects of spirinolactone: https://www.mayoclinic.org/drugs-supplements/spironolactone-oral-route/precautions/drg-20071534.
Sounds like you are going to see the neurologist tomorrow, @lulu? Are you planning to discuss the possibility of hypnic headache?
@shaylala - you mentioned you'll be starting a round of prednisone. How do you typically do on that medication?