Chronic severe nocturnal hypnic headaches

Posted by taterjoy @taterjoy, Aug 29, 2016

I am looking for anyone else who has been diagnosed and treated for chronic, severe nocturnal hypnic headaches. I have had them for about 12 years, and on treatment, but not optimal treatment. I am interested in hearing how others with this rare diagnosis are being told to treat them safely.

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gussie | @gussie | Aug 18, 2023

In reply to @benchi300 "hi may i ask are you still satisfy with the quilpta or the effect lessened? thank..." + (show)

I stopped it. I think it stopped working and the side effects were just too much for me.

Avion | @benchi300 | Aug 15, 2023

In reply to @gussie "It's been almost two months on Quilpta which is the same thing as the injectables in..." + (show)

hi may i ask are you still satisfy with the quilpta or the effect lessened? thank you

Avion | @benchi300 | Aug 15, 2023

In reply to @mazeppabob "I had the same issue for years and would wake usually early morning with a headache...." + (show)

hi may i ask if youve been able to keep the morning headaches away. I see your post is from 2020 , how are u doing with the hypnic headaches? still under control? thanks

gussie | @gussie | Jun 24, 2023

In reply to @gussie "It's been almost two months on Quilpta which is the same thing as the injectables in..." + (show)

Update to my 15 mg of Qulipta. I don't think it's working anymore and will have to go back up to the 30 mg. Not looking forward to the constipation and more hair loss. But so far it's working on the headaches during sleep and nothing did that before.

gussie | @gussie | Jun 19, 2023

In reply to @benchi300 "have anyone with Hypnic Headaches tried the injections (Aimovig, Ajovy, Emgality) they usually give for people..." + (show)

It's been almost two months on Quilpta which is the same thing as the injectables in pill form. I was on 30 mg but the constipation and the hair loss was so bad she had me half the dose at 15 mg. A lot of people are on 60 mg. So far the 15 mg is working for my hypnic headaches and the constipation is so much better. I still wake in the morning with a slight headache which a cup of coffee takes care of. I can't take Miralax which a lot of people take because the PEG gives me awful headaches.

Avion | @benchi300 | Jun 18, 2023

have anyone with Hypnic Headaches tried the injections (Aimovig, Ajovy, Emgality) they usually give for people with migraines and if so , did it help? Thanks

gussie | @gussie | Apr 26, 2023

I have been on Quilpta for a week now and so far it's pretty amazing. I don't know if this will last or be like the prednisone and after awhile go back to my ugly nightime routine. It is constipating however. And now I'm on a diuretic and that has the same side effect so have to work on that. If it does work I just hope she continues to give me samples.

gussie | @gussie | Apr 23, 2023

I tried taking a half of Quilpta last night before bed and no headache. Now we will see how my stomach reacts. I can only get samples of it from my neuro because Medicare doesn't cover much and it would still be close to a $1000 a month.

gussie | @gussie | Apr 22, 2023

I noticed that when I had to take a Medrol pack in January for hives, my night headaches went away. Also no headaches during the day. That was in January, now we're in April and my hypnic headaches are back full force. I hate taking prednisone but the six day dose just stopped all pain for three months. I have tried Nurtec and Ubrelvy and they did nothing at all. My neuro also gave me a sample of Quilpta and my stomach just went crazy.

frances007 | @frances007 | Feb 21, 2023

In reply to @akalsas "Have tried caffeine at bedtime but it never helped. Caffeine at onset has helped but now..." + (show)

I was recently diagnosed with migraines and my neurologist gave me a sample of Nurtec. It dissolves in your mouth and you take it at the onset of what you think might be a migraine. I took it for the first time a few days ago, and I have to say that this medication is fantastic. One is only allowed 8 tablets per month, per my insurance, but I would highly recommend you check this one out.
I understand the pain. It is exhausting to say the least