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

@patiencepie

I’m in bed right now awake at 3:45 am waiting for a horrible hypnic headache to pass. The pain is extreme and I know everyone here understands completely. I have taken my caffeine and am waiting patiently and trying not to cry. This has been happening now every single night for weeks and each week the pain ratchets up a notch. The neurologists at my regional Headache Clinic confirm that this is hypnic headache although sometimes a migraine piggybacks on it. While caffeine and Imitrex eventually help, taking them every night has destroyed my waking life too since after taking caffeine I’m wide awake and grinding my teeth for the next four hours. This cycle happens every single day. Excruciating pain followed by upset stomach ,
drowsiness and depression. If this is my new normal then it’s time to research suicide because this quality of life is not sustainable for me. I’ll obviously think hard and consult a psychiatric specialist before taking any kind of action but if this severe daily pain is a permanent condition I don’t want to grind on for decades. I can’t imagine what it would be like to have this unbearable pain and also suffer from dementia. It could explain the patients screaming in nursing homes. Perhaps they are in the middle of a horrific migraine and no one knows or cares. I watched my beautiful mother—a triathlete who developed Alzheimer’s — weeping and thrashing in her bed, unable to speak and clearly suffering. The nursing staff couldn’t figure out what she was experiencing so just gave her Ambien. But what if it was acute migraine? Please god no one should suffer like that. Being trapped in this pain with no hope or help is my deepest fear. Doctors are sympathetic but in the end they DON’T know how you feel and can go home and forget about you. Which of course they do. It’s human nature. I’m realizing that ultimately the reality of a life dominated by pain will not be sustainable for me. Lots to think about.

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Understand how u feel! The pain, lack of sleep and lousy functioning I. Daytime

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@akalsas

Have had he for 15 yrs and severity and frequency increasing. Unable to use prescription meds. Using caffeine at onset, Pemf, Reflectology, massage and now trying chiropathic.

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@akalsas
Hi and welcome to Mayo Connect. So you have night headaches as well which affect your sleep? I can't imagine having to deal with headaches that interfere with sleep for 15 years! My heart goes out to you.

I notice that others have mentioned drinking coffee before bedtime has helped them with this problem. Caffeine at that time sounds counterintuitive but it's interesting that for this problem it can be helpful. You mentioned several other treatments you have tried as well. Have any of them been helpful? Has your chiropractor had any new suggestions?

I hope you have read through all the posts in this discussion (and other discussion related to headaches). One can often find lots of useful tips and tricks that way. Not to mention how others deal with similar problems.

Best, Hank

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@akalsas

Have had he for 15 yrs and severity and frequency increasing. Unable to use prescription meds. Using caffeine at onset, Pemf, Reflectology, massage and now trying chiropathic.

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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.

Liked by Hank

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I wish there was something I could do take that would eliminate my headaches. I cannot drink coffee. I have had migraines for 22 years. When I get up[ to do something at night and am having a migraine my gait is staggering. Sometimes they awaken me and the room is whirling. I must sit it an upright position and put my head down for a while to get rid of that feeling. I am tired all day because of mine. Has anyone else noticed this? If I have one in the morning after I get up when I get tired my vision suddenly gets double and I can get staggering gait. I have atypical migraines. Does anyone have atypical migraines? All medications and chiropractic have failed.

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@jesfactsmon

@akalsas
Hi and welcome to Mayo Connect. So you have night headaches as well which affect your sleep? I can't imagine having to deal with headaches that interfere with sleep for 15 years! My heart goes out to you.

I notice that others have mentioned drinking coffee before bedtime has helped them with this problem. Caffeine at that time sounds counterintuitive but it's interesting that for this problem it can be helpful. You mentioned several other treatments you have tried as well. Have any of them been helpful? Has your chiropractor had any new suggestions?

I hope you have read through all the posts in this discussion (and other discussion related to headaches). One can often find lots of useful tips and tricks that way. Not to mention how others deal with similar problems.

Best, Hank

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Have tried caffeine at bedtime but it never helped. Caffeine at onset has helped but now am wondering if my body is either causing side effects from caffeine or the after effects of the h’ache. Will do trial without caffeine. Thanks for your concern and reply. This is the first place that I have found others with similar symptoms and empahy

Liked by Hank

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@lsittll

I wish there was something I could do take that would eliminate my headaches. I cannot drink coffee. I have had migraines for 22 years. When I get up[ to do something at night and am having a migraine my gait is staggering. Sometimes they awaken me and the room is whirling. I must sit it an upright position and put my head down for a while to get rid of that feeling. I am tired all day because of mine. Has anyone else noticed this? If I have one in the morning after I get up when I get tired my vision suddenly gets double and I can get staggering gait. I have atypical migraines. Does anyone have atypical migraines? All medications and chiropractic have failed.

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I too feel sooo tired for the entire day and unsteady for several hrs.

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@akalsas

Have tried caffeine at bedtime but it never helped. Caffeine at onset has helped but now am wondering if my body is either causing side effects from caffeine or the after effects of the h’ache. Will do trial without caffeine. Thanks for your concern and reply. This is the first place that I have found others with similar symptoms and empahy

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@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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@taterjoy

HI Colleen, thankyou for your rapid response and suggestion. I read Dr. Swansons summary years ago, and have tried all of the treatments listed (one by one, and in combinations). I have been taking Indomethacin preventatively now for nine years nightly exactly two hours before bedtime and I drink coffee before bedtime as well. I take a medication to prevent stomach ulcers also. I have tried others listed with it (lithium, Depakote). Before the diagnosis of Hypnic headaches and use of indomethacin, I was waking up 4 times nightly, cyclically at the same tiems each night, with a severe inflammatory headache. I basically woke up and had to quickly stand, grab my head, and pace for hours crying. I could not sit or lie down, and usually ended up throwing up after hours of pacing and being so fatiqued I could no longer stand. Prevention with Indomethacin has helped me more than other remedies, but it too fails from time to time, and many mornings I awaken with a mild hypnic headache despite preventative treatment.

The main issues I have is periods of abdominal severe irritation with Indomethacin (I then take Carafate when acute), and I would say on average, the indomethacin fails at least 1-2 times per month, in which case I inject Toradol in the middle of the night (to avoid the ER), and take frovatriptan and ondansetron with it. If all else fails, I end up at the ER (about once every 2 years in recent years–it used to be more often). The diagnoses are Hypnic headaches, cluster headaches, and hormonal migraines (cyclically). I used to wear a Sancuso patch 24/7 to help prevent vomiting all night and ending up at the ER, but my vomiting is under better control now. The Narcotic that was prescribed historically (Stadol) made me violently sick (vomiting and diarreah). I have had about 3 brain scans over the years due to the violent intensity of the headaches upon waking; all showed no tumors.

All in all, I have tried about 40 meds and/or combinations of meds over the years to control hormonal migraines, hypnic headaches, and cluster headaches. I believe the hormonal migraine headaches are related to diagnoses of PCOS (for which I have used strict diet, exercise, and weight control since I was 20 years old) and hashimotos thyroiditis with hypothyroidism. Before treatment with Synthroid begun in 2002, my headaches were chronic daily headaches. I also have two endocrine related allergies. In the past I was patient of two specialists at Jefferson Headache Center in Philadelphia, PA;, and also have seen a specialist in North Carolina (Charlotte area); and one in San Francisco most recently (I live in CA now). This San Fran. Specialist diagnosed Hypnic headaches in 2007 after about 5 months, having me on about 7 different meds prior to diagnosis; but after a few months, his advice became bizarre and unhelpful.

Despite how this sounds, I am otherwise healthy. I eat healthfully, my weight is kept around 110 (5’5″) and I exercise daily. All vital signs and cholesterol values are normal.

I would love to hear from those have tagged in hopes that they may know other patients with recalcitrant hypnic headaches to learn what they are doing, and what might work. I have been a part of an internet international Support Group for headaches moderated by Teri Roberts for over 30 years, and have not met even one patient yet with hypnic headaches. Thank you so much for replying to my comment!

Very happy to see that Mayo set up Mayo Connect! Thanks again for your help Collen!!!

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Have had Hypnic h’aches for over 15 yrs. have liver issues with meds so must use natural remedies.

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Has anyone one used ave or ces therapy( I.e.David delight pro) to change the brain waves to help prevent h’aches as well as primatene mist to abort?

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@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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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

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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Good morning. I'm new to this group for nocturnal hypnic headaches. My headaches (migraines actually) began only a few weeks ago. Working with my family doctor for a diagnosis/treatment. The occurrence is nightly around the same time, approximately 2-3 hours after going to sleep (I'm a 73 year old male, using a CPAP machine for years now. Can't seem to figure out how to post a general question to this group for comment and reply. Hoping you can direct me to the link. Thank you
Post note; I'm finding caffeine, walking daily as well as this 4 point exercise to help. Hope it helps you and others as well: Sorry, as new member "they" will not allow me to post a link yet. "Attention Required
Your message cannot be posted. To protect against unwanted spam, newly registered members are not eligible to post messages that include links and URLs. Please try again without links, try again in a few days or contact support."

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@gej95014

Good morning. I'm new to this group for nocturnal hypnic headaches. My headaches (migraines actually) began only a few weeks ago. Working with my family doctor for a diagnosis/treatment. The occurrence is nightly around the same time, approximately 2-3 hours after going to sleep (I'm a 73 year old male, using a CPAP machine for years now. Can't seem to figure out how to post a general question to this group for comment and reply. Hoping you can direct me to the link. Thank you
Post note; I'm finding caffeine, walking daily as well as this 4 point exercise to help. Hope it helps you and others as well: Sorry, as new member "they" will not allow me to post a link yet. "Attention Required
Your message cannot be posted. To protect against unwanted spam, newly registered members are not eligible to post messages that include links and URLs. Please try again without links, try again in a few days or contact support."

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@gej95014 Welcome to Mayo Clinic Connect. It sounds like you are seeking proper care for your nocturnal hypnic headaches but you are still unsure why you are having the headaches and how to treat them. Did I get that right?

As a new member there is a waiting period before you post a link. We do this to protect members from unwanted spammers. I know it is frustrating. You can post a new discussion without links.

May I ask what question you want to post to the group?

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@gej95014

Good morning. I'm new to this group for nocturnal hypnic headaches. My headaches (migraines actually) began only a few weeks ago. Working with my family doctor for a diagnosis/treatment. The occurrence is nightly around the same time, approximately 2-3 hours after going to sleep (I'm a 73 year old male, using a CPAP machine for years now. Can't seem to figure out how to post a general question to this group for comment and reply. Hoping you can direct me to the link. Thank you
Post note; I'm finding caffeine, walking daily as well as this 4 point exercise to help. Hope it helps you and others as well: Sorry, as new member "they" will not allow me to post a link yet. "Attention Required
Your message cannot be posted. To protect against unwanted spam, newly registered members are not eligible to post messages that include links and URLs. Please try again without links, try again in a few days or contact support."

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@gej95014 Below I have posted link you were unable due to the new member waiting period.

4 Ways To Ease A Headache Almost Instantly
http://stayhealthymag.com/4-ways-to-ease-a-headache-almost-instantly/

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@erikas

@gej95014 Welcome to Mayo Clinic Connect. It sounds like you are seeking proper care for your nocturnal hypnic headaches but you are still unsure why you are having the headaches and how to treat them. Did I get that right?

As a new member there is a waiting period before you post a link. We do this to protect members from unwanted spammers. I know it is frustrating. You can post a new discussion without links.

May I ask what question you want to post to the group?

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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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@erikas

@gej95014 Welcome to Mayo Clinic Connect. It sounds like you are seeking proper care for your nocturnal hypnic headaches but you are still unsure why you are having the headaches and how to treat them. Did I get that right?

As a new member there is a waiting period before you post a link. We do this to protect members from unwanted spammers. I know it is frustrating. You can post a new discussion without links.

May I ask what question you want to post to the group?

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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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