hypnic headaches

I am eager to hear from anyone suffering hypnic headaches.  All that I have read from the 'net indicates that hypnic headaches are "rare."  I know that my general practicioner, three neurologists have never treated a hypnic headache patient.  I have a headache every night, about an hour and a half after falling asleep.  I have had these headaches for 3 1/2 years.  I have been prescribed fioriset, generic, for headache pain, but i don't know if it works or if the headache just goes away on its own.  Headaches range from mild to severe - from 30 minutes to over three hours.  Any information, advice, appreciated.  Thanks

I hadn't heard of hypnic headaches until I read your post. From the bit of web crawling that I've done it sounds pretty interesting and I imagine I can find some good information if I have the chance to take a closer look.

In the meantime, take a look at the IHS ICHD2 information page on them: ihs-classification.org/en/02_klassifikation/02_teil1/04.05.00_other.html

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DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
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I can be contacted personally via email at korbnep:healingwell@gmail.com.

It appears the thread on hypnic headache needs to be renewed and enlivened .From what we can find in researching on the net even though it considered rare there are a lot more people suffering from hypnic than is published. One site posted an article and it was getting at least 200 hits a month, so they decided to do an internet study." Hypnic Headache: Causes and Treatment reported by sufferers" by Dr. Raeburn Forbes and Dr. Rachel Kee
My wife has been suffering for 2-3 years, waking consistently at 1AM to 3AM and in pain for about 90 minutes to 2 hours. It was destroying her and our life because of the repercussions the following day, ie interrupted sleep and sometimes lingering pain. We went to doctors and no one had any idea, the final straw being the last doctor saying, "I don't know, what are you going to do?"
So the research began and we have made some huge strides forward. The biggest help so far has been drinking a cup of coffee just before bed. We found that not any run of the mill coffee is adequate because of the molds and micotoxins in most varieties. We found Bulletproof coffee offered by Dave Asprey to be the best as he has had mold problems and loves coffee so he found a source for third party tested mold free coffee and he offers it on his website. http://www.bulletproof.com/coffee-drinks/coffee/?gclid=CPyg3fTLv8cCFYQ8aQod0kIO2Q
As of late she has been adding some Phosphatydl choline and butter or ghee and a dollop of honey as it helps with the stomach and sleep.
The caffeine is the best thing so far but have more to share if we can get this going!

I realize its been a couple of years since a post on this topic....which makes sense because this is a rare headache syndrome.

I have suffered for years beginning at 50 from this and only a few years ago learned what it was. I would get a terrible headache in the middle of the night and try to sleep through it or finally wake and take Excedrin. Upon waking for the day, the may have gone (with Excedrin) or upon waking I would take it and that would ease the severity, but it would be another 4 hours before the pain would completely go away. The sooner I took it the faster it quieted the pain. The headaches began sporadically and slowly increased in frequency over time.

I assumed they were migraine headaches, but I finally googled the proper terms to come up with Hypnic Headache. BINGO. Those were my symptoms exactly. I had avoided caffeine so that it would not disrupt my sleep (having had sleep issue while going through menopause).

I began taking 2 Excedrin at bedtime and that keeps them at bay. However, this past week I woke with headache that lasted 4 days. I switched up pain relievers (thinking rebound headache), upped my water intake (in case it was from dehydration), and ordered a mouth guard for my teeth grinding (all of which I attributed as possible causes for the 4 day headache.

I am a Bulletproofer but do not drink BP coffee at night. I was considering caffeine tablets that I can just take and go to bed. Anyone do that? They come in higher dosages and I would need to cut them in half. I would like to avoid the other components to Excedrin I take in order to get my 65mg of caffeine, which works for me. I guess I could drink an iced black coffee at bedtime. I worry that the caffeine in that form may hurt my ability to sleep.

Thanks!

apologies for the delay in responding..

One thing of note, Excedrine is well known for rebound headaches, I am not clinical, but I would guess, that was the 4 day pain..

I spent some time on the migraine site I browse. There is not a whole lot of information on treatments.. where this discouraging, I would not give up hope..

I URGE you to talk to your doctor about these headaches, there are medications that help and reduce or stop the pain.

Also I have added a link for your info.

www.mhni.com/headache-pain-faq/unique-neurological-conditions/hypnic-headaches

Peace
Trina

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Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
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DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Am happy to find this. This summer I started having what has been diagnosed as hypnic headaches shortly before being diagnosed with a couple tick borne illnesses. (Both were confirmed through conventional testing). At first the headaches were diagnosed as cluster headaches before later being diagnosed as hypnic headaches.

At first the diagnosis seemed to fit. I would fall asleep and about 10-60 minutes after falling asleep, I would jolt awake with an intense headache. The first 60 or so minutes would be intense pain and then the next hour or two it would generally fade away somewhat until I was able to get back to sleep. However, the heachaches seem to have transformed somewhat. For a while, I would get the headaches immediately after falling asleep regardless of whether it was in the evening or during the daytime. The intensity has either become reduced or I have adapted to them somewhat, but I’m generally able to sleep through them for 4-6 hours but do wake up feeling like I went 10 rounds. I also unfortunately seem to be dealing with them at a reduced but fairly persistent level during the day quite frequently. I’m not 100% convinced of the diagnosis because I don’t seem to fit the textbook example. The one thing that is certain is that they are definitely triggered when I sleep. I can even feel them coming on when I close my eyes or try to meditate.

I’m curious whether other sufferers meet the textbook symptoms or whether they are susceptible to them whenever they fall asleep.