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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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akalsas | @akalsas | Jul 22, 2022
In reply to @jesfactsmon "@akalsas Have any of the other things you have tried helped at all? Does anything give..." + (show)
Profile picture for Hank @jesfactsmon

@akalsas
Have any of the other things you have tried helped at all? Does anything give you relief? Again it seems unfathomable to live in this pain for 15 years and find nothing that gives even temporary relief. Did you happen to read my posts about the Shifa migraine tea? If you use the search window above and enter the word shifa you will get links to some of those posts. My wife has used it successfully to treat her headaches. Might be worth looking into for yourself. Best, Hank

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Tried without change. Thanks for suggestion

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akalsas | @akalsas | Jul 22, 2022

I have had Hypnic h’aches nightly for 17+ yrs and the severity and frequency are increasing as I age. Have empathy for you as I just am not finding anything to decrease # or severity but caffeine 50 mg when awakened with 250 mg flush niacin plus getting up to music, computer, walks,tasks
seems to help sometimes. Have tried acupuncture, massage, chiropractic adjustments, now trying cft and transcranial direct current therapy.
Where can we find a support gr? Especially during the night or at least to just support each other? I feel sleep deprived and than the emotional aspects just are often too much to carry.

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1 reply
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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 22, 2021
In reply to @akalsas "Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief." + (show)
Profile picture for akalsas @akalsas

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

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I found this information from Mayo information. Hypnic headaches.
https://www.mayoclinic.org/diseases-conditions/chronic-daily-headaches/expert-answers/nighttime-headaches/faq-20057919

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akalsas | @akalsas | Aug 22, 2021
In reply to @astaingegerdm "I usually get sinus pressure headaches at night, at times severe. I usually apply a heating..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

I usually get sinus pressure headaches at night, at times severe. I usually apply a heating pad and take acetaminophen and a decongestant.
Are you only having headaches at night?
Did you see a Neurologist when you had the MRIs?
As you know there are different types of headaches, such as tension, cluster and migraines- there probably are more.
It appears to be a vicious cycle- if you don’t get enough sleep, chances of getting a headache are large. If you have a headache- you can’t sleep.
A good Neurologist should be able to tell what type of headaches you have. There are also several different medications used to bring good sleep back, and then headaches will lessen too.

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H’ache only when sleeping. Have seen several Neuro’s. Meds not help and caused side effects. Caffeine only thing that helps to treat h’ache but does nothing to abolish the h’aches

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Profile picture for Ingegerd Enscoe, Alumni Mentor
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 21, 2021
In reply to @akalsas "Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief." + (show)
Profile picture for akalsas @akalsas

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

Jump to this post

I usually get sinus pressure headaches at night, at times severe. I usually apply a heating pad and take acetaminophen and a decongestant.
Are you only having headaches at night?
Did you see a Neurologist when you had the MRIs?
As you know there are different types of headaches, such as tension, cluster and migraines- there probably are more.
It appears to be a vicious cycle- if you don’t get enough sleep, chances of getting a headache are large. If you have a headache- you can’t sleep.
A good Neurologist should be able to tell what type of headaches you have. There are also several different medications used to bring good sleep back, and then headaches will lessen too.

REPLY
1 reply
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akalsas | @akalsas | Aug 20, 2021
In reply to @akalsas "Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief." + (show)
Profile picture for akalsas @akalsas

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

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I
Have had a total of 3 mri’s. One with contrast. Nothing noted. How do you handle the lack of sleep?

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Profile picture for Ingegerd Enscoe, Alumni Mentor
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 20, 2021
In reply to @akalsas "Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief." + (show)
Profile picture for akalsas @akalsas

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

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@akalsas - I am curious to know if you had a MRI of the brain and evaluation by a Neurologist?
I also hate the headaches at night

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akalsas | @akalsas | Aug 19, 2021
In reply to @johnbishop "Hello @akalsas, You will notice that we changed your discussion title to pose your question in..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @akalsas, You will notice that we changed your discussion title to pose your question in hopes that it will bring more members into your discussion. Here are a few articles I found related somewhat to your question that may be helpful until members with experience can respond.

A study from 1984 - "Plasma melatonin, cortisol, GH and prolactin levels were determined by radioimmunoassay. Most of the cluster headache patients showed a decrease in..." -- A chronobiological study of melatonin, cortisol growth hormone and prolactin secretion in cluster headache: https://pubmed.ncbi.nlm.nih.gov/6518501/

Melatonin and cortisol profiles in late midlife and their association with age-related changes in cognition:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731002/
Circadian Variation of Migraine Attack Onset: A Review of Clinical Studies
-- https://www.hindawi.com/journals/bmri/2019/4616417/

Have you had the chance to discuss it with your doctor or care team?

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In past discussed but no help. I need to search for md that thinks along thes lines. Tired of h’aches and lack of sleep

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akalsas | @akalsas | Aug 19, 2021
In reply to @johnbishop "Hello @akalsas, You will notice that we changed your discussion title to pose your question in..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @akalsas, You will notice that we changed your discussion title to pose your question in hopes that it will bring more members into your discussion. Here are a few articles I found related somewhat to your question that may be helpful until members with experience can respond.

A study from 1984 - "Plasma melatonin, cortisol, GH and prolactin levels were determined by radioimmunoassay. Most of the cluster headache patients showed a decrease in..." -- A chronobiological study of melatonin, cortisol growth hormone and prolactin secretion in cluster headache: https://pubmed.ncbi.nlm.nih.gov/6518501/

Melatonin and cortisol profiles in late midlife and their association with age-related changes in cognition:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731002/
Circadian Variation of Migraine Attack Onset: A Review of Clinical Studies
-- https://www.hindawi.com/journals/bmri/2019/4616417/

Have you had the chance to discuss it with your doctor or care team?

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Thanks a lot

Sent from my iPad

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 19, 2021
In reply to @akalsas "Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief." + (show)
Profile picture for akalsas @akalsas

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

Jump to this post

Hello @akalsas, You will notice that we changed your discussion title to pose your question in hopes that it will bring more members into your discussion. Here are a few articles I found related somewhat to your question that may be helpful until members with experience can respond.

A study from 1984 - "Plasma melatonin, cortisol, GH and prolactin levels were determined by radioimmunoassay. Most of the cluster headache patients showed a decrease in..." -- A chronobiological study of melatonin, cortisol growth hormone and prolactin secretion in cluster headache: https://pubmed.ncbi.nlm.nih.gov/6518501/

Melatonin and cortisol profiles in late midlife and their association with age-related changes in cognition:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731002/
Circadian Variation of Migraine Attack Onset: A Review of Clinical Studies
-- https://www.hindawi.com/journals/bmri/2019/4616417/

Have you had the chance to discuss it with your doctor or care team?

REPLY
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