Chronic severe nocturnal hypnic headaches

Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

I am a 62 year old female in otherwise excellent health at 5’5”, 120lbs. I exercise regularly and have a decent diet. I began experiencing hypnic headaches the end of August 2018. They began waking me every few nights with severe pain in left side of head only. I tried Zomig which I have on hand for occasional migraines but it did nothing. I would sit and hold an ice pack to my head for hours, and start drinking coffee. Doctor put me on Amitriptyline and scheduled an MRI but couldn’t get in for weeks. She also prescribed a strong pain med that didn’t help. They got so severe after the first few weeks and woke me every night about 2:30 that we finally went to the emergency room. They did 3 different MRI’s and a CAT scan which ruled out our worst fears. Met with neurologists, and luckily found this post one night while up with pain and desperately seeking answers. My neurologist confirmed the Hypnic headache classification. I began taking Melatonin, along with Amitriptyline which disrupted the regularity of the headaches but did not stop them. Found caffeine and exedrin migraine help the pain per suggestions found here. The neurologist added Topomax as a preventative. Although the headaches became less frequent and somewhat less severe, the side effects of the medication left me shaky, cloudy thinking, and feeling pretty awful most of the time. I went to a chiropractor too since I do have back and neck issues, and while he helped those issues it had no effect on the headaches. However, I had discontinued estrogen therapy several months ago and thought this could be related. After having a hysterectomy at 52, I had started bio-identical estrogen therapy which greatly reduced the number of migraines I was getting pre-menopausal. I started estrogen patches at a lower dose last week and began weaning myself off the other meds. I haven’t been awakened by a headache since and am down to 5mg Melatonin (from 12mg) completely off the Topomax and only took 1/4 of the 50mg Amitriptyline last night. I feel so much better today I’m beside myself. I will keep you posted if anything changes. I wanted to share this since your suggestions helped me through such a terrible and frightening time.

I began getting morning headaches at 55 for the first time with the beginning of menopause that were easy to cure with my morning coffee and getting up.I eat well exersize,am happy and relaxed.Later I got the classic 2 or 3 am headaches, that only Excedrin would cure.They progressed to nightly and with more pain.I noticed a monthly cycle that matches the moon with regards to the intensity.
Even though I am post menopausal now at 60, they have not gone away. I tried 3 preventative drugs with no response , accupuncture and every supplement possible. I was first diagnosed with cronic Migraines but now they label me with a Hypnic Headache. I think my circadian rythmn is off from lack of sleep and hot flashes as well as many trips overseas.I sleep better with eye shades.Recently I tried a caffeine pills before bed and melatonin.So far it's working and I am glad to be off Excedrin.Time to give my stomach a rest. I even feel less bloated and swollen from the improvement with inflammation.Crossing my fingers it continues for a whole month.
I would love to connect with anyone else who is studying this too.

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.