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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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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @so4tune8 "Hello. I’m new here and have been taking in the great conversations of this sight. But..." + (show)
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Hello. I’m new here and have been taking in the great conversations of this sight. But on this subject I had to reply. Migraines were a continual fact of my life. I have tried so many of the therapies mentioned on this thread. Some of the triptans were somewhat helpful but never totally successful. I had a course of Sphenopalatine Ganglion Blocks, Botox, but nothing worked. Somehow they eventually turned into “alarm clock” (hypnic) headaches. I was prescribed Verapamil but this caused heart issues.
I then moved to Atlanta and started going to Emory. I found a solution. They gave me a “Greater Occipital Nerve Block”. This isn’t a cure but a relief. I received 2 shots in the back of my neck where the Occipital nerves begin and spread across the brain. I HAVE NOT HAD A HEADACHE SINCE!!

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When you had your headaches where were they what part of your head mine are behind my eyes

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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @johnbishop "Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must..." + (show)
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Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
-- https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/

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I've tried verapamil topamax caffeine cup of coffee caffeine tablets none of that works verapamil and topamax just made me pass out a lot I have low blood pressure as it I'm a skydiver and I can't be passing out every time I stand up to leave the plane bad things would happen

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 29, 2019
In reply to @timpowell84 "There is a new medication that FDA just approved in June called Aimovig.ask your Dr about..." + (show)
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There is a new medication that FDA just approved in June called Aimovig.ask your Dr about it.just curious when you have your headaches where is the pain.mine is behind the eyes

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Hi, @timpowell84 - We've had a few other members mention using erenumab (Aimovig), like @hedjhog @msb18 @gothope @laluzhiker @quazar. I'd invite them to share any experiences using this medication for headache.

@timpowell84 - have you tried taking erenumab (Aimovig)? If so, has it made a difference with the severe nocturnal hypnic headaches?

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2 replies
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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @contentandwell "@timpowell84 Your headaches sound absolutely horrible and debilitating. As a past migraine sufferer, I have to..." + (show)
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@timpowell84 Your headaches sound absolutely horrible and debilitating. As a past migraine sufferer, I have to say that this sounds so much worse. It obviously does have similarities though since Imitrex is used for migraines also.
At least you have something that gives you some relief, unlike before these newer drugs were developed.
JK

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Problem is I take way too much imitrex like up to 20 doses a month I'm afraid stroke is next

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timpowell84 | @timpowell84 | Jan 29, 2019

There is a new medication that FDA just approved in June called Aimovig.ask your Dr about it.just curious when you have your headaches where is the pain.mine is behind the eyes

REPLY
1 reply
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JK | @contentandwell | Jan 29, 2019
In reply to @timpowell84 "My sleep deprivation has been going on for over four years now I take sleep aids..." + (show)
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My sleep deprivation has been going on for over four years now I take sleep aids but when I have my headaches it burns through them and I still wake up with excruciating eye pain

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@timpowell84 Your headaches sound absolutely horrible and debilitating. As a past migraine sufferer, I have to say that this sounds so much worse. It obviously does have similarities though since Imitrex is used for migraines also.
At least you have something that gives you some relief, unlike before these newer drugs were developed.
JK

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1 reply
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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @colleenyoung "Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number...." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

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My sleep deprivation has been going on for over four years now I take sleep aids but when I have my headaches it burns through them and I still wake up with excruciating eye pain

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1 reply
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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @colleenyoung "Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number...." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

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Thank you for your help I've been searching for a long time to find other people with the same symptoms or somebody who can help me rather than put me in a psych ward and give me psych meds that won't stop my headaches I wake up after 2 hours of sleep with excruciating eye pain it feels like somebody's pushing on my eyeballs from the inside

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timpowell84 | @timpowell84 | Jan 29, 2019
In reply to @johnbishop "Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
-- https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/

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I take imitrex that's the only drug that I found that stops the headaches narcotics don't touch it morphine doesn't touch it Demerol doesn't touch it Dilaudid doesn't touch it I tried aimovig for 2 months it reduced for 2 months down to 6 then stopped working went back up to 23 headaches the next month

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2019
In reply to @timpowell84 "Please help I suffer from hypnic headaches for the last 17 years up to 23 a..." + (show)
Profile picture for timpowell84 @timpowell84

Please help I suffer from hypnic headaches for the last 17 years up to 23 a month with 2 hours of sleep each night I have a headache I wake up with excruciating eye pain I suffer from severe sleep deprivation including hallucinations due to lack of sleep sleep aids don't help headaches burn right through them please help

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Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

REPLY
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