Chronic severe nocturnal hypnic headaches

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

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 24x7.

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.

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.

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

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?

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 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

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.