Chronic severe nocturnal hypnic headaches

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.

Hi Cheryl!

If you google "hypnic headaches" and read many of the summary articles by research physicians, you might see case reports of people not being able to lie down with them, since lying down can make the pain severe. That is my case also. Once awakened by them, I bolt out of bed and pace for hours upright. Before I used preventatives, I would become exhausted (usually about 3 hours of pacing, when no acute meds were helping). I would then sit on the floor with my back pushed tight (upright) against the wall. Sleeping on a propped wedge did not help me, but your idea of nearing standing while sleeping is amazing! and Clever!

I am so glad you are getting relief from caffeine. I met a Vietnam Veteran who had terrible headaches, and his only help was to drink coffee on and off all day. The VA system did not diagnose his headaches as hypnic, and offered little treatment; but he figured out that he felt better walking all day, rarely sitting or lying down. Very sad.

I do hope that caffeine continues to help prevent your headaches, and that your siblings will also get some much needed assessment and treatment options. The literature on migraines sadly relays that undertreated migraine can lead to stroke, and also to brain lesions. I do believe my own hypnic headaches stem from brain trauma due to under-treatment of migraines, for years. Every case may be different. I'm so hopeful that research on Hypnic headaches and Migraines will lead to more effective, well-tolerated treatments that are not terribly expensive.

Thank you for your well-wishes! I have not met another person that has hypnic headaches, and though we are not positive that yours are, it is really wonderful to connect with you and hear about your creative solutions to treatment! If I find other solutions, I will let you know. I am now taking a class in Qi Dong and finding it very relaxing--it's a bit like Tai Chi, but more about the breathing and healing component. Time will tell!

Taterjoy

I am 76 and have had nocturnal headaches for about 12 years. I was one of those people that had migraines starting from my late twenties until I went through menopause. Most of those have stopped unless I'm around strong odors or don't eat on time or drink alcohol. They run in my family. My poor grandson has them now. They were always the same. In my right eye only. Never got nauseated just had to go to bed and suffer until Imitrex came on the scene. Then in 2006 I started waking up with a different headache. Starting at the base of my head and moving like a rams horn to the sides. It woke me up every night at about 4 am. It would get so bad that I would vomit and ended up in the ER on IV dilauded (the drug from hell). The first year I landed in the ER ten times. The was after taking Imitrex and fioraset with codiene. I had been a patient of Dr. Goldstein in San Francisco for many years and he is the first one to mention hypnic headaches. He switched his practice from migraine clinic to testing many illnesses for the drug companies. He really never listened anyway and spends very little time with his patients. I did see other neurologists in the bay area and after just one visit describing the symptoms was told you have hypnic headache. Not until I started reading the letters on this site did I realize that the pain can be so bad. All the other literature I had read said it lasted from 30 minutes to a few hours. Since my pain gets worse and worse and is not self-ending I didn't think I had this. So I have been coping with this by getting up and taking Imitrex almost every night. I also was diagnosed around the same time with a rare condition called CVID. (boy in the bubble disease). The same disease, but not as bad. He had no immune system at all. Part of my immune system doesn't work. So I use the plasma of other peoples antibodies to protect me from infections and viruses because we don't make antibodies from vaccines. I orginally thought maybe the two things were connected somehow. I also thought it might be from something wrong with my neck since it started from the back of my head. I had PT, lidocaine injections and botox injections but really didn't help either. I don't think I have slept through the night in all these years. I also have IBS, which is part of my immune system problems so its taking drugs is always very hard on my stomach. I know this is long, so thank you for letting me vent. It's always helpful when you know you're not alone.
Also finding a neurologist in this area isn't easy.

@lisalucier I thought I responded to your post long ago but I guess I did not...I'm sorry! Things that improve my overall health have also helped reduce the frequency and/or intensity of headaches to a certain extent. They include eating smaller meals more frequently to keep sugar levels from roller-coasting; "breathing meditation" and Tai Chi; regular cardiovascular exercise and keeping my weight under control so as not to provide Polycystic ovarian disorder symptoms and resultant hormonal fluctuations. Specifically for headache prevention or to use during headaches: wearing wrap-around style dark "wear over glasses" sunglasses to avoid sun and glare; avoiding movie theaters (flicker, glare, and loud noise); black out curtains in our home to keep temperature levels from fluctuating, keep glare to a minimum, and to facilitate sounder sleep (helps melatonin); avoiding MSG, nitrates, nitrites and any food that are out of date or "old" in the frig; staying hydrated; drinking coffee at onset of migraine, and at PM, as a component in preventing hypnic headache); dressing in layers so that controlling body temp is easier. I try to avoid avoid being around cigarette smoke and smoky air due to fires, campfires, and barbeque grills. Many of my friends LOVE Scented Candle parties, and I run in the opposite direction! I avoid Elevators (too much perfume or smoke-smell) and take stairs when possible. I've tried many different types of pillows, bedding fabrics, body soap, and laundry detergents over the years, always suspecting SOMETHING was triggering my headaches; none of those seems to have an impact though I usually avoiding highly scented products.

I kept diaries on and off and avoided "common" trigger foods for lengthy periods, but hormonal cycles were the only obvious correlation and no foods other than MSG and possibly nitrates/nitrites. I tried many nonRX treatments for recommended trial intervals (CO-Q, feverfew, B vitamins, MegaMagnesium, lavender roller-sticks, massage, acupressure, biofeedback, and probably others) which do help many migraine sufferers, but did not impact mine. I never drank wine or alcohol, so I don't know if they are triggers for me or not.

When in crisis, a scalding hot shower to head and neck can divert my migraine pain until injections kick in. For migraines, sometimes cold packs or putting with ice in my mouth, help divert the head pain temporarily. At one time in my life, being able to go to sleep helped relieved some migraines, but now with Hypnic headaches, it's not an option unless I have taken indomethacin two hours prior. I strive for a "routine" nightly sleep pattern, but that's elusive due to family obligations across time zones. I am in great overall health, despite having very debilitating headache types that sort of trigger one another. Thanks for asking, Lisa!

No....you can self-refer. I was in a wheelchair for about two months in early 2016 with severe leg pain. I had an open MRI as well as x-rays but no one here could figure out what was going on....and I live near Philadelphia, PA! I called the main appointment number for Mayo in Rochester, MN. They asked for my x-rays, etc.. I did get an appointment; it took about two months to get it. I was diagnosed with severe degenerative disc disease and will need surgery in the near future but physical therapy and epidural steroid injections really helped.

No....you can self-refer. I was in a wheelchair for about two months in early 2016 with severe leg pain. I had an open MRI as well as x-rays but no one here could figure out what was going on....and I live near Philadelphia, PA! I called the main appointment number for Mayo in Rochester, MN. They asked for my x-rays, etc.. I did get an appointment; it took about two months to get it. I was diagnosed with severe degenerative disc disease and will need surgery in the near future but physical therapy and epidural steroid injections really helped.