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.

Liked by teach

@gej95014

Yes you have it right. My family practitioner has finally referred me to a neurologist for a video visit today at 4pm. We'll see. This is the question: how do I discover what is causing the hypnic migraines? Treatment can be a good thing; but, seeking the root cause so I can work on that is IMHO a good direction. Medications to date aren't helping. In fact IMHO they have made the situation worse. They've put me on anti-depressants (Zoloft first, then Lexapro. Both made it worse), What are others' taking that helps? That is the question to the group. To me; discovering the cause and working on that is the priority. Was it something I did? Something I'm doing? Something I'm taking? Something I took in the past?

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I also get hypnic headaches. I find that mine can be seasonal. They seem to get worse when the amount of sunlight gets less. My opinion is that it has something to do, then, with melatonin. When mine ramp up again in the fall of the year, I take melatonin. Currently I’m taking 5 mg. of melatonin. I have gradually gone up to 15 mg. in the past with my neurologist’s blessing. I also take gabapentin. I also adjust that slightly up or down depending on my needs. Sometimes a strong 1/2 cup of coffee before bed also helps. Don’t expect a lot of help from your neurologist. These headaches are rare and they likely have not treated many patients with them. Best of luck to you. These headaches are miserable.

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@gej95014

Yes you have it right. My family practitioner has finally referred me to a neurologist for a video visit today at 4pm. We'll see. This is the question: how do I discover what is causing the hypnic migraines? Treatment can be a good thing; but, seeking the root cause so I can work on that is IMHO a good direction. Medications to date aren't helping. In fact IMHO they have made the situation worse. They've put me on anti-depressants (Zoloft first, then Lexapro. Both made it worse), What are others' taking that helps? That is the question to the group. To me; discovering the cause and working on that is the priority. Was it something I did? Something I'm doing? Something I'm taking? Something I took in the past?

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My bought with these horrible nocturnal hypnic headaches came on 2 years ago in the early fall. I was desperate to find the answers you seek and any relief I could find. Unfortunately, I never could confirm the source, but after trying many of the drugs, caffeine, melatonin, etc., my neurologist gave me a steroid step down prescription late December and by mid January they stopped. I only had 1 or 2 milder episodes in the following month and nothing after. My neurologist hypothesized that a nerve had been irritated and that the steroid calmed it back down. Hope this helps you. Truly the most frightening and painful thing I’d experienced (outside of childbirth!). Good luck!

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@mishifu

There appears to be a mix-up. I did not post to this thread. It seems to be a male person who did.

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@mishifu Welcome to Mayo Clinic Connect. May I help direct you to a discussion? I'm wondering what your interest is in sleep health?

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@shaylala

My bought with these horrible nocturnal hypnic headaches came on 2 years ago in the early fall. I was desperate to find the answers you seek and any relief I could find. Unfortunately, I never could confirm the source, but after trying many of the drugs, caffeine, melatonin, etc., my neurologist gave me a steroid step down prescription late December and by mid January they stopped. I only had 1 or 2 milder episodes in the following month and nothing after. My neurologist hypothesized that a nerve had been irritated and that the steroid calmed it back down. Hope this helps you. Truly the most frightening and painful thing I’d experienced (outside of childbirth!). Good luck!

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Thank you. Was it Prednisone?

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@jana15

I also get hypnic headaches. I find that mine can be seasonal. They seem to get worse when the amount of sunlight gets less. My opinion is that it has something to do, then, with melatonin. When mine ramp up again in the fall of the year, I take melatonin. Currently I’m taking 5 mg. of melatonin. I have gradually gone up to 15 mg. in the past with my neurologist’s blessing. I also take gabapentin. I also adjust that slightly up or down depending on my needs. Sometimes a strong 1/2 cup of coffee before bed also helps. Don’t expect a lot of help from your neurologist. These headaches are rare and they likely have not treated many patients with them. Best of luck to you. These headaches are miserable.

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Thank you, it's a work-in-process

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@gej95014

Thank you. Was it Prednisone?

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Yes…I think I provided dosage in this thread way back when.

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@akalsas

Unable to find your posts but went to the Shifa web site. Does your wife use the Shifa company tea or another company’s Shifa? Thanks

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@akalsas
I am sorry I did not see this when you posted it on 11/20. In case you are still monitoring Connect here is the link to the tea on Amazon:
https://smile.amazon.com/gp/product/B01N3QDZ74/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1&fpw=alm
It has been more helpful for my wife than anything else she has tried for her headaches. Best, Hank

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@jesfactsmon

@akalsas
I am sorry I did not see this when you posted it on 11/20. In case you are still monitoring Connect here is the link to the tea on Amazon:
https://smile.amazon.com/gp/product/B01N3QDZ74/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1&fpw=alm
It has been more helpful for my wife than anything else she has tried for her headaches. Best, Hank

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Thanks

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