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taterjoy
@taterjoy

Posts: 41
Joined: Aug 30, 2016

Chronic severe nocturnal hypnic headaches

Posted by @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.

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REPLY

Welcome to Connect @taterjoy.
Here is a response from Mayo expert, Dr. Jerry W. Swanson, who responded to a similar question http://www.mayoclinic.org/diseases-conditions/chronic-daily-headaches/expert-answers/nighttime-headaches/faq-20057919
I’m also tagging fellow Connect members @lauriedr @teege1 @lisafl @dawn_giacabazi @jals. While they haven’t reported specifically hypnic headaches (night time headaches), they have all talked about managing chronic headaches.

TaterJoy, what treatment are you currently taking? Do you continue to be woken up every night? Functioning on interrupted sleep can’t be great for optimal functioning.

Liked by 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!!!

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Welcome, Cheryl.
Good for you for doing your research. I understand the desire to have a wholistic approach to your sleep issues and headache issues. Have you considered consulting with a sleep medicine center? Here’s a description of the Sleep Medicine Center at Mayo http://mayocl.in/2d9garj. I understand you may wish to go elsewhere, but I wanted you to know they exist.

I’m tagging @kdubois and @sandytoes14 in case they have personal experiences to add along with @taterjoy.

Cheryl, what is the significance of drinking strong coffee before bed? How does that help?

@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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on the sites I have read, coffee (or caffeine tablets) are one of the suggested treatments, although not as effective as lithium, but I don’t want to use that drug unless I have to.

Liked by taterjoy

@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Hi Cheryl, and welcome! I so appreciate your post, and am so happy for you that caffeine coffee can prevent your nightly headaches, which do sound like Hypnic headaches. I am sorry it took a while to find the correct diagnosis. It is such a rare headache, that the specialist I was seeing in California who has conducted primary research on headaches for decades, did not for a long time “recognize” my symptoms though I was desperately traveling to see him every month for many months, for relief. When I was finally diagnosed, there were only about 87 cases worldwide reported in the medical literature since the late 1980s, when they were first reported by a Dr. Raskin. I had been seening (for years) two other nationally prominent headache specialist neurologists in other states (not at Mayo–I lived too far away) prior to seeing the headache specialist who finally diagnosed it. It is/was such a rare headache, that many at that time had never seen a patient with it. It might still be rare, and possibly most general neurologists across the USA have never diagnosed it treated patients who have hypnic headache.

Topimirate did not help me, either. Unfortunately, neither did many cups of coffee or caffeine tablets prior to bedtime. Like you, I also had serious Migraine headaches (under-treated) for many years and I have read in the literature that some other people with Hypnic headaches share that history. A few other possible risk factors that were mentioned (but not proven) included a history of employment with “shift work” (circadian rhythm issues) and frequent travel through time zones, or moving across time zones. I shared those “possible” risk factors but not these others that were discussed as potential risk factors such as history of long-term smoking tobacco, COPD, and/or sleep apnea. I pray that this disorder is not a progressive one and that your headaches can always be prevented by drinking two cups of strong coffee before bedtime; or that these headaches can/will someday resolve on their own. Thank you so so very much for posting, Cheryl!

@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Dear Taterjoy, Thank you for your response. I have not been diagnosed with hypnic headaches yet, but at least I now know that there is this category which seems to match what I have. I have also been through two sleep studies to eliminated apnea and whatever else, plus MRIs.
I can hardly imagine going through what you have gone through. The headaches I have been getting the past twelve years have not been as severe as my old daytime migraines, which definitely had a hormonal component (but were not daily, more like 10-15/month). At that time I used Imitrix for relief, but have had two mild heart attacks, and have been told to discontinue use of that family of drugs.
Have you heard/read anything of a possible genetic component? Two of my siblings, who have also been migraine sufferers through their adult life, are now waking at night with headaches. It seems unlikely that such a rare form of headache would strike three members of one family, but I am going to suggest they read about hypnic headaches.
My sincere best wishes to you. I hope you have now connected with a neurologist whom you trust.
Cheryl

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@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Dear Cheryl, I have not heard about a genetic component to Hypnic headache, and none of my relatives have headaches during the night, or upon wakening. However, my Mom did have migraines prior to menopause. Migraines can awaken sufferers from sleep (or waking with headache in the AM) and other conditions such as sleep apnea and those that that impose on oxygen flow (such as COPD, chronic smoking, etc) have been listed as suspected causes. I don’t know if any are proven. I hope they can find their causes, and get some relief even if causes cannot be isolated/treated.

I am sorry to hear that you had two heart attacks and can no longer take Imitrex of others in that category. I hope your MD can provide other satisfactory treatments and/or preventatives for your migraines. I do believe that undertreating migraines can be a risk factor for hypnic headaches. I am trying harder to treat migraines quickly, use preventatives religiously, and remain hydrated; these methods usually help, but an ER trip (and overnight) to the hospital this weekend demonstrates that even preventatives and rapid acute treatment cannot always keep a migraine from escalating to a point of emergency. I am grateful to the Ambulance team and to the ER MD’s who helped me recover. Feeling better, two days later. Here’s hoping for better treatments, and cures! Taterjoy

Dear Taterjoy,

I am so sorry to read about your recent acute migraine. I have not had a headache that bad since the last time I had to take nitroglycerin! I’m glad you’ve recovered, but what an awful bout you must have had.

I wanted to add one piece of information about my headaches. About four years ago, I started sleeping in an almost upright position. Because the headaches would often go away IF I got up immediately upon waking with one, I thought perhaps I could forestall them by simply not lying down. Sitting up was not a perfect solution, but I feel it helped to some degree.

However, since learning about hypnic headaches, and taking caffeine at night, I have had only two headaches in thirteen days. This is a huge improvement. I have even been able to spend a larger portion of the night sleeping supine. I am taking more caffeine than what was recommended on the sites I read. (Either one strong cup of coffee plus 100 mg. caffeine tablet, or one 200 mg. tablet)

I have not yet made an appointment with a new neurologist, so this remains “my own diagnosis” at this point.
I’ll let you know what I learn when I do meet with someone.
I hope you do not have another bad migraine attack for a long time!

Cheryl

@cherylsd

Dear Taterjoy,

I am so sorry to read about your recent acute migraine. I have not had a headache that bad since the last time I had to take nitroglycerin! I’m glad you’ve recovered, but what an awful bout you must have had.

I wanted to add one piece of information about my headaches. About four years ago, I started sleeping in an almost upright position. Because the headaches would often go away IF I got up immediately upon waking with one, I thought perhaps I could forestall them by simply not lying down. Sitting up was not a perfect solution, but I feel it helped to some degree.

However, since learning about hypnic headaches, and taking caffeine at night, I have had only two headaches in thirteen days. This is a huge improvement. I have even been able to spend a larger portion of the night sleeping supine. I am taking more caffeine than what was recommended on the sites I read. (Either one strong cup of coffee plus 100 mg. caffeine tablet, or one 200 mg. tablet)

I have not yet made an appointment with a new neurologist, so this remains “my own diagnosis” at this point.
I’ll let you know what I learn when I do meet with someone.
I hope you do not have another bad migraine attack for a long time!

Cheryl

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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

@cherylsd

Dear Taterjoy,

I am so sorry to read about your recent acute migraine. I have not had a headache that bad since the last time I had to take nitroglycerin! I’m glad you’ve recovered, but what an awful bout you must have had.

I wanted to add one piece of information about my headaches. About four years ago, I started sleeping in an almost upright position. Because the headaches would often go away IF I got up immediately upon waking with one, I thought perhaps I could forestall them by simply not lying down. Sitting up was not a perfect solution, but I feel it helped to some degree.

However, since learning about hypnic headaches, and taking caffeine at night, I have had only two headaches in thirteen days. This is a huge improvement. I have even been able to spend a larger portion of the night sleeping supine. I am taking more caffeine than what was recommended on the sites I read. (Either one strong cup of coffee plus 100 mg. caffeine tablet, or one 200 mg. tablet)

I have not yet made an appointment with a new neurologist, so this remains “my own diagnosis” at this point.
I’ll let you know what I learn when I do meet with someone.
I hope you do not have another bad migraine attack for a long time!

Cheryl

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Hello Again,

I have to make a clarification to my last reply. When I said I was sleeping in an almost upright position, I meant sitting, not standing. I can see that wasn’t clear. I don’t know how you managed during the period when you spent hours each night, pacing. I have not read about the consequences of undertreated migraines, but I will look that up.
Stay in touch!
Cheryl

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@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Hi @cherylsd, I also get headaches when sleeping at night, but I think they are very much seem to be weather-related (barometric pressure maybe) and only worse during certain times of the year (now, for instance). There will be long periods of time, for instance weeks, where they will just plague me, and then go away for a while again. When these weeks occur, the headaches are definitely worse when I wake up in the morning.

One of my neurologists suggested topiramate as a prophylactic treatment, but I had a lot of drug metabolism polymorphisms and a drug-expert doctor I consult with regularly said that she does not think I should take it. Int he past, I’ve been prescribed verapamil as a prophylactic, and I had less headaches, but it made me sleep almost 24×7.

Very interesting that coffee (caffeine) seems to have helped you sleep. The only time it did with me was before we figured out that I have drug metabolism polymorphisms and I was so full of so many meds that were making me sick actually making me sleep a lot.

@cherylsd

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We’ll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

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Hello Kelly,

My night headaches have been year-round, and not attributable to anything I’ve ever been able to isolate. I’m sorry you are suffering with the seasonal/barometric element. I know that does affect many people. (I have to look up ‘drug metabolism polymorphisms’, as I am unfamiliar with that term.)

I was also recommended topiramate, and took it for almost four years. I recently discovered that it is linked to bone density loss, a problem I already have. Needless to say, I am unhappy that no doctor mentioned this as a serious side effect.

So far, the coffee/caffeine treatment is working quite well. I had another headache-free night last night. It’s early days, but I am hopeful.

I wish you well in finding a treatment that eases your headaches. We fellow sufferers know how debilitating they are!

Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at various times on Mayo Clinic Connect. Just wanted to check in with you and see how things are going with your headaches recently?

Thanks for asking, @lisalucier! I wish I could report that Menopause was the end of my hormonal migraines, and that my hypnic headaches were either “history” or were episodic rather than nightly occurrences. I have participated in national and international support groups (unaffiliated with a medical group) for about 40 decades, and the ability to connect with others who “get it” and stay up to date on treatment options, has been a source of strength and hope. The site monitor of many of these groups, Teri Robert, networks with headache specialists across the country, many of whom are running clinical trials. She is a wonderful “interpreter” for patients who have limited medical knowledge or exposure, and she is a diehard advocate for headache sufferers: she has addressed Congress. For many patients who are not successfully “controlled” via acute meds, preventatives, and or rescue meds, she provides ongoing “reports and analyses” of some of the newest breakthroughs, techniques, and clinical trials. She also has no ego, and being a chronic headache sufferer herself, she has much empathy for patients, patients’ families, physicians, and physician-specialists who share the frustration of incomplete “control” of headaches.

I am so appreciative that my preventatives for severe hypnic headaches work very well 75% of the time, adequately for about 20% of the time (but not preventing them 100%), and yet there are about half a dozen nights per year that my preventative meds fail completely. For those occasions, I use the rescue meds which usually work eventually, but am having to go to the ER maybe twice per year. I have theories regarding the “failures,” and I recognize patterns. I need to see a specialist that has dealt with hypnic headaches, and a team that can address endocrine and autoimmune issues that are probably contributing. It is on my bucket list to visit Mayo Clinic someday, but traveling through time zones worsens the hypnic headaches, and I am traveling through 3 times zones often to visit my elderly Mom already. I did visit a headache specialist in Northern California about ten years ago, who after many months, successfully diagnosed the hypnic headaches and got me on track with fairly effective preventatives. I lost faith in this specialist down the road, when his input was inappropriate and counterproductive. My physicians (and pharmacists) at Kaiser have been extremely helpful in trying a multitude of options, and in approving use of some non-formulary brands or doses of non-narcotics when they feel it is necessary. I am so fortunate that they care.

I hope that @cherylsd @kdubois @lauriedr @teege1 @lisafl @dawn_giacabazi @jals are all doing better: Thank you for reaching out to us, Lisa (and also for Colleen’s earlier tags). It is always helpful to hear how other people with recalcitrant headaches are doing, as well as their insights regarding which treatments (prescription and nonprescription) and lifestyle measures have been most beneficial.

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