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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 | 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.

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1 reply
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

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2 replies
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)
@benchi300

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

Jump to this post

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.

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2 replies
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)
@gussie

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.

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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.

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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)
@mazeppabob

I had the same issue for years and would wake usually early morning with a headache. It would get progressively worse and not go away for hours. I found like you caffeine at the onset. I know they don't recommend this, but I will take one Excedrin (has caffeine) every morning then go back to bed for a while. This usually works for me. The trick is to catch the headache before it really takes off.

About two years ago I started having headaches 24/7 and like you tried everything. I have poor posture from sitting at a computer for years. My chiropractor suggested using a foam roller to help with the posture. The first day I used it my back cracked between the shoulder blades. The next day the headaches stopped. Because I have a difficult time getting up from the floor I bought a low profile massage table on Amazon. So now every morning I roll up and down from neck to lower back. They have stayed away for a year now.

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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

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1 reply
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)
@gussie

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.

Jump to this post

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

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1 reply
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)
@benchi300

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

Jump to this post

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

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1 reply
shaylala | @shaylala | Aug 20, 2023
In reply to @benchi300 "hi may i ask if youve been able to keep the morning headaches away. I see..." + (show)
@benchi300

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

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Thankful the headaches have never returned.

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2 replies
gussie | @gussie | Aug 21, 2023
In reply to @shaylala "Thankful the headaches have never returned." + (show)
@shaylala

Thankful the headaches have never returned.

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Oh no the headaches are back. I also have very vivid dreams all night every night. I wonder if they are causing some sort of tension headache every night. They started when the headaches started but I can't find a doctor that has even heard of that. Finally on Mayo Clinic Connect I have found other people with this odd situation.

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taterjoy | @taterjoy | Aug 21, 2023
In reply to @suzbuck11 "I haven't visited a headache specialist yet. I have visited a neurologist in the past for..." + (show)
@suzbuck11

I haven't visited a headache specialist yet. I have visited a neurologist in the past for other things but I will say it is not a match for me. I haven't been brave enough to try the coffee but I guess I can do that on a day where I don't have any major responsibilities the next day. I've seen some people mention estrogen - I am already on that but that doesn't seem to help. I find I tend not to move if I am having one of these headaches so then I get stiff too. I find it hard to get up because I am in a lot of pain but I know that that is the only way to get past the headache. Wondering if taking an imitrex prior to bed time would help? I don't particularly want to be on additional medications but just wondering if it might help?

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Never tried imitrex prior to bedtime to prevent the headaches, nor treatment with estrogen. The regimen I am on (Indomethacin plus caffiene) was started by a headache specialist in San Fran,CA. Other meds for "hypnic" headaches did not work for me. While my regimen usually worked, my Mayo MD is hoping to ween me off Indomethacin since its not safe for long-term use (GI bleeding risk). I do take an additoinal med to help prevent GI bleeds called pantoprazole. I hope you can find safe treatments that are effective.

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