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Chronic severe nocturnal hypnic headaches
Headache & Migraine | Last Active: 2 hours ago | Replies (274)Comment receiving replies
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
Replies to "Hi Cheryl! If you google "hypnic headaches" and read many of the summary articles by research..."
I have had them daily for 10 years as well. I am also hoping to get better treatment.
@taterjoy @cherylsd
Hello All…I am new to this groupi andfound this discussion cruising thru Mayo’s group.
I am a 83 year old woman living in NYC..since 2019 i’ve been having Hypnic Headaches….prior to then, i’ve been suffering with Trigeminal pain caused by a dentist… one night in 2019 the trigeminal pain changed and shot to the middle of my forehead. The pain was intense and I ended up taking 40 mg of prednisone the next day I went for a checkup at my oncologist. I describe to her what it happened and she immediately had me go home to call up another hospital to get an appointment with a specialist. She thought perhaps I might have had “Large Cell Arthritis.” A illness that would cause me to have a stroke, go blind, and probably die!!! long story short I happened to get the right specialist who was studying this particular illness and was rushed into surgery to have a procedure on the side of my head, where a sample of the artery was taken. Turns out I did not have the dreadful illness, but they didn’t know what I had!!! so much for the Medical world…. I started to see a neurologist who also didn’t understand what I had but put me on Fiorcet…I loved Fiorcet.. Wake up in middle of night, take pill and within 30 minutes pain would stop and i would fall back to sleep… No side effects at all.. then i went to a new Neurologist. somewhere along the line, my trigeminal neuralgia came back and now I was having two different kinds of pain. I would take either prednisone or Fiorcet depending upon the pain. after a while, my neurologist decided that I did not have any kind of migraines, but more something related to headaches. I ended up at the headache division at Weil Cornell Hospital in New York City. My own research led me to realize that I have something called Hypnic Headaches. I am sure my doctor is good but he’s big on pushing pills. I’ve tried several kind, but they’re all related to migraines and did nothing for me except to make me nauseous and or sleepy. Further, my own research brought me to a procedure for my trigeminal pain he knew nothing about. I found out about a procedure through the Mayo Clinic. The procedure for nerve pain is called Scrambler Therapy….however, that’s another story. At this point in time, I just completed my second round of 31 Botox injections into my forehead, face and back of head. I am told that the Botox procedure gets better with every episode. I will be doing this every three months. I have also switched over to Rizatriptan for the headaches as I seem to have built up a resistance to the Fiorcet… most times the rizatriptan works, but occasionally I might have to take a repeat dose. all I know about hypnic headaches is that it has something to do with a malfunctioning hypothalamus, the melatonin and circadian rhythm. Obviously not much is known about it, but I am glad to have found others that have the same problem. i’ve tried taking melatonin, but it didn’t do much and it made me feel worse the next day. I also tried changing my sleep habits, but that doesn’t seem to have any effect either. And yes, i’ve always been a coffee drinker and drink a lot of it throughout the day in the evening. And I did read about taking caffeine before going to sleep. I have a cup of coffee on my nightstand and when I wake up during the night either from pain or to go to the bathroom, I drink my coffee. So let’s keep sharing what we know and maybe we will find an answer on our own..
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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.