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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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Headaches are no fun and can be so very difficult to diagnose. Their are just so many triggers that can make it complex for the patient to identify and the physicians. For me know how to identify the type of headache I’m experiencing aides in my choosing my line of defense from my arsenal. Going through the Pain Consortium Clinic at Mayo Clinic Rochester Minnesota was the BEST way to build my arsenal!! I now able to find relief using yoga, bio feedback, multiple types of relaxation techniques, Ricci, acupressure all before turning to medication. I have STRESS & chronic migraines secondary to partial complex temporal seizures, tonic colonic seizures, pedimal seizures, Hyperaldosteronism, severe secondary Hypertension, and a adrenal gland tumor (just a few) which all cause different types of headaches. It was/is imperative that I know which treatment to start with. Mayo Clinic helped me build my best line of defense!!!

Yes I still get an occasional headache but they are quickly relieved and I know longer get them daily. Usually 1 a month or less.

Praying you can build your arsenal of defense.
Thank you @lisalucier

@taterjoy

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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Thanks for the update on your experiences with hypnic headaches, @taterjoy. Sounds like you have a good handle on the latest research in headache and the patterns with your headaches and the meds. Also sounds as though you’ve gotten good support from those who are familiar with headache, which is great. Glad your doctors are caring about your situation.

If you did want to travel to Mayo Clinic at some point, one option would be to go to Mayo Clinic in Arizona. I believe you are in the West, and this would help you avoid some of the issues you face with your headaches when you cross time zones.

You mentioned something about lifestyle measures and headache. What lifestyle changes or patterns have been helpful to you with your headaches?

Liked by taterjoy

My headaches are always worse in the spring and fall, so it’s not been the best lately. I call them barometric pressure / weather-related headaches. Sometimes Advil works, but too much can damage the colon, so I only take it when absolutely necessary. A good old hot shower does help.

@kdubois

My headaches are always worse in the spring and fall, so it’s not been the best lately. I call them barometric pressure / weather-related headaches. Sometimes Advil works, but too much can damage the colon, so I only take it when absolutely necessary. A good old hot shower does help.

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@kdubois I too get spring and fall headaches but i have always assumed they were allergies of the season. Thankfully they are not as bad now as they used to be. After menopause, when my migraines stopped, my other headaches seemed to lessen in severity too.
JK

@kdubois

My headaches are always worse in the spring and fall, so it’s not been the best lately. I call them barometric pressure / weather-related headaches. Sometimes Advil works, but too much can damage the colon, so I only take it when absolutely necessary. A good old hot shower does help.

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Yay, @contentandwell a perk for menopause! I know that I had one aunt who’s migraines stopped after menopause, so there’s hope! Maybe my weather-related headaches will get better, too.

@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!

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.

Hi Gussie,

Welcome to Connect. I too suffer from migraines but they are usually controlled by taking Maxalt. I am so sorry to hear that you cannot sleep through the night. Are you able to travel? Maybe there is someone at one of the Mayo Clinic locations who can help.
You are in my thoughts and prayers,

Helen

@bernese53

Hi Gussie,

Welcome to Connect. I too suffer from migraines but they are usually controlled by taking Maxalt. I am so sorry to hear that you cannot sleep through the night. Are you able to travel? Maybe there is someone at one of the Mayo Clinic locations who can help.
You are in my thoughts and prayers,

Helen

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Thanks Helen. Would love to travel on a cruise or to Europe but between my IBS and this problem I stick to domestic only. Do you need a referral to Mayo

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.

@bernese53

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.

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That's another question I have. At my age, body parts are starting to wear out. I may have to go in for hip replacement this summer. Since this rare headache only appears while sleeping, what happens when you have general anesthetic. Does it make the side effects worse? I have never had surgery.

@bernese53

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.

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Hi, @gussie –you pose an interesting question about hypnic headaches and having general anesthesia. I think that would be a great question to ask your surgeon when you go see one about hip replacement.

Do you have any strategies for how to get some sleep in the midst of having hypnic headaches?

I live in the San Francisco bay area and am wondering if CBD oil would help. It's legal here. I won't try anything with THC in it because I overreact to most drugs. I went to a "migraine specialist" in San Francisco for thirty years and while I had what I call my regular migraines, he also diagnosed me with my hypnic headaches. He fired me as a patient last year because I was his only private pay patient. All his practice entails now is doing testing for drug companies for different diseases. I have yet to find a neurologist in the Bay Area. In reading Hypnic headaches it says they are self regulating. That they last a number of hours. Mine just gets worse and worse until I'm vomiting and have to go to the ER. They started about 12 years ago when I was 65. I take an awful lot of Imitrex and if that doesn't help, Fioracet with Codiene. I haven't slept through the night in all these years without the pain waking me up between about 3 and 4. It always starts in the back of my head to the point that just touching the back of my head to anything hurts. Sometimes if my husband massages the back of my head where the pain is it relieves the pain. If I catch it before it really gets bad. I would love to try and drink a couple of cups of coffee before bed except I have IBS and coffee isn't the greatest thing for tummy issues. Also I wouldn't sleep at all. I do know after all these years with headaches if I drink chai tea (my drink of choice) the caffeine does help. Maybe I'll try the caffeine pills.

@bernese53

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.

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I do notice when I take one Excedrin Tension headache pill before bed I still get the headache but it does seem to be not as intense. The pill has some caffeine in it so that may be the reason. I just bought some caffeine pills and haven't started them yet, but anxious to see if they help. Will keep you posted.

@bernese53

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.

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Please do let us know how the caffeine pills work for the hypnic headache, @gussie.

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