Chronic severe nocturnal hypnic headaches

Posted by taterjoy @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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@shaylala

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.

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Stop the Excedrin by taking a caffeine pill right away when you feel a headache is coming. I may take it even at 6 pm or 8 if I had a stressed day . I believe the other medicine in Excedrin wore me down and triggers Migraines.All the drugs did.The less I take the better for me. Melatonin can be tricky too.Before I noticed it could even make my migraine worse if I take it after onset of headache.So now I try to get my caffeine pill taken and hour before I take melatonin do it can do it's job better blocking the adenosine.

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@shaylala

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.

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@shaylala I am sorry to hear you are going through this. I never had hypnic headaches but I had severe migraines, usually once a month for 3 or 4 days, occasionally two times a month. Back then there wasn't anything for them. Imitrex came out near the end of my headaches but I was afraid to try it. My daughter suffers from severe migraines now.
I presume the drugs you mention are more recent improvements since Imitrex came out. I'm really not sure what she uses.
If the headaches can be treated similarly to migraines, there are some new treatments out now. Of course they have been using Botox for a while but there is something newer that is supposed to be even more effective. I could check with my daughter because I don't remember the name of it now. I do not believe it is yet covered by insurance, but when you are in such pain it can be worth it.
I hope you will find a solution, having suffered from migraines for so long I can almost feel your pain.
JK

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@meme59

Stop the Excedrin by taking a caffeine pill right away when you feel a headache is coming. I may take it even at 6 pm or 8 if I had a stressed day . I believe the other medicine in Excedrin wore me down and triggers Migraines.All the drugs did.The less I take the better for me. Melatonin can be tricky too.Before I noticed it could even make my migraine worse if I take it after onset of headache.So now I try to get my caffeine pill taken and hour before I take melatonin do it can do it's job better blocking the adenosine.

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@meme59 @shaylala When you take headache medications too frequently you have to be very conscious of "rebound headaches" too. Too frequent use of many of these cause this.
JK

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@lisalucier

When will you start the prednisone, @shaylala? It would be great if you could post here about how that goes.

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@lisalucier I am planning to start the prednisone in about 10 days. Taking a trip with girlfriends and don't want to chance anything new until I'll be back at home. I will update you on that once I've started it.

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@meme59, thanks for your advice. I got some caffeine pills today and will use those before bed tonight instead of the excedrin, per your suggestion. I have a very dear friend that's a dean of pharmacology. He told me a long time ago that pain responds better if you don't wait until it's awful to take the meds. Likened it to stopping a car before it starts to roll down the hill. Once it's rolling it's much more difficult to stop. Like these headaches, when they began waking me the pain was already so severe it seemed nothing would help, not even the stuff they added to my IV the night we went to the emergency room. Truly was shocked to discover over the counter meds were helping when I stumbled upon this group. What a blessing you all have been!

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@shaylala

@meme59, thanks for your advice. I got some caffeine pills today and will use those before bed tonight instead of the excedrin, per your suggestion. I have a very dear friend that's a dean of pharmacology. He told me a long time ago that pain responds better if you don't wait until it's awful to take the meds. Likened it to stopping a car before it starts to roll down the hill. Once it's rolling it's much more difficult to stop. Like these headaches, when they began waking me the pain was already so severe it seemed nothing would help, not even the stuff they added to my IV the night we went to the emergency room. Truly was shocked to discover over the counter meds were helping when I stumbled upon this group. What a blessing you all have been!

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Good Luck, I feel the same.

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@shaylala

@lisalucier I am planning to start the prednisone in about 10 days. Taking a trip with girlfriends and don't want to chance anything new until I'll be back at home. I will update you on that once I've started it.

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@shaylala Sounds like a sensible plan. I never heard of prednisone for headaches, but it sure seems to be a very multi-purpose drug.
JK

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@shaylala

@meme59, thanks for your advice. I got some caffeine pills today and will use those before bed tonight instead of the excedrin, per your suggestion. I have a very dear friend that's a dean of pharmacology. He told me a long time ago that pain responds better if you don't wait until it's awful to take the meds. Likened it to stopping a car before it starts to roll down the hill. Once it's rolling it's much more difficult to stop. Like these headaches, when they began waking me the pain was already so severe it seemed nothing would help, not even the stuff they added to my IV the night we went to the emergency room. Truly was shocked to discover over the counter meds were helping when I stumbled upon this group. What a blessing you all have been!

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@shaylala Your friend is correct, I have been told the same thing. I think we all want to wait, hoping the pain will get better, but it rarely does.
Caffeine of course is the "magic ingredient" in many headache pills like Excedrin and really is helpful for migraines, and probably for hypnic headaches also.
JK

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Hi – I have just found this group and am utterly relieved there is such a "syndrome"? As Hypnic Headaches. I have been suffering with these for the last year and a half on and off but they are becoming frequent and acute the last four months. I have been to my numerous specialists and healthcare providers and am furious not one professional has ever heard of this nor bothered to do further research. I have had an occipital nerve block and am scheduled for a cervical epidural at present. Seeing Neuro the 20th. I have told my Physiatrist about my symptoms and she ordered an MRI of my brain and brain stem, then another one of my cervical spine. Brain MRI was normal, cervical revealed a few minor disc issues, disc dehydration, minimal narrowing etc.. but not what would be casuing these headaches which are atypical. I have had migraines for past 20 years. Nothing like this and usually controlled w/ 50 mg Imitrex and Zofran. They are better. Had a forced hysterectomy at age 46 and and have been on hormone replacement therapy for last 10 years. I am astonished there are others suffering with these headaches. They typically hit between 2:00-3:00 am. The pain is always on the left side only and throbbing. Hurts to even touch area at C1/2 and surrounding soft tissues. Wakes me out of a dead sleep as I take 10 mg of ambien nightly to sleep (I have classic insomnia). The pain is so severe I thought maybe I was having an aneurism the first time it hit. I wake up and can hardly lift my head to get out of bed, I struggle to do this. My blood pressure is elevated from the pain and my heartrate goes very high. ( I normally have consistently low BP) I had a vasovagal response from the pain in recent episode. Which was scary. I immediatey try to get an ice pack and put it on my neck in bed and try to lay there until it is numbed away. This has worked in the past but it's beginning to be ineffective. A few times I have kept the ice pack in a small chest by bed. I have gotten to the point where I am scared to go to sleep sometimes because of the pain. I have only tried SPRYX nasal puff (toradol) for the pain, but its difficult to lean over and use accurately when in so much pain. I have been thinking it is something I do positionally/functionally while sleeping as I get in some strange postions and am restless sleeper, often uncomfortable and I also have RA. I have done years of manual therapy but just seems to flare things up at times and conditions seems chronic but now acute. I have also tried sleeping sitting up as position seems to be a possible factor??? It's making me crazy and lack of sleep isn't helping. I realize this is lengthy and too much info but I am so relieved I am not crazy and (sadly) there are others who have these symptoms with valuable information to share. Thank you so much for this group. I am going to read every post again as I think information is power! Grateful, Lulu

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@lulu1962 – Glad you found this group too. I was just as frightened when these began about 4 months ago and mine is severe left side only as well. Worse than any migraine I ever experienced and nothing was helping the pain. I too, apply ice. Please try excedrin migraine rapid release as soon as you notice the pain or are awakened by it. No narcotic the doctors gave me helped and it blows me away that caffeine is more successful than even sumatriptan injections! I'm starting a round of Prednisone and will update on how that goes. I had a hysterectomy in 2007 and also have some degenerative discs and some herniated in both neck and low back but it doesn't seem to be related. I also have chronic sinus problems but control with Zyrtec, Flonaise and sometimes Afrin. The doctors told me the MRI did not show any problems with my sinuses that would explain the pain. Please stay in touch. It helps to know you're not alone. Maybe we can discover something we all share that could help explain this. You're in my prayers.

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Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms are definitely similar. Have you had any success with prednisone treatment? I meant to tell you I had a Dr. (mayo trained and Rheumatologist) who once treated me with IV steroids as I
was in the middle of a severe migraine attack. It is considered recue or breakthrough treatment and it worked, He had an infusion center and fortunately it was easily accessible. I do think there is a possible link in having adrenal fatigue (hypoadrenia) and hormone levels possibly affecting sleep hormones etc… I wonder if anyone in this group takes Spironolactone, (I'm on 100mg for Bioidentical HRT – fluid retention) Could there be any problem there? Also- i drink a lot of water daily. I don't drink coffee or tea or really anything other than water. I have a dry mouth related to RA and I even worry if I'm drinking too much wter?? I just wonder if migraine sufferers get in a cycle of adrenal stress from med side effects and lack of sleep, (poor sleep hygeine etc..) My gyno (hormone specialist) actually started me on a very low dose of prednisone years a go to see if it helped w inflamatory issues/migraines but it was too hard on my gut) I hope this treatment gives you some relief. It would be wonderful if it does. I know this time of year is tough on everyone- it makes eveything crazier as life and schedules ramp up. My prayer has become "please God-don't let me have a headache tonight". Blessings to all, Lulu💓

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@lulu1962

Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms are definitely similar. Have you had any success with prednisone treatment? I meant to tell you I had a Dr. (mayo trained and Rheumatologist) who once treated me with IV steroids as I
was in the middle of a severe migraine attack. It is considered recue or breakthrough treatment and it worked, He had an infusion center and fortunately it was easily accessible. I do think there is a possible link in having adrenal fatigue (hypoadrenia) and hormone levels possibly affecting sleep hormones etc… I wonder if anyone in this group takes Spironolactone, (I'm on 100mg for Bioidentical HRT – fluid retention) Could there be any problem there? Also- i drink a lot of water daily. I don't drink coffee or tea or really anything other than water. I have a dry mouth related to RA and I even worry if I'm drinking too much wter?? I just wonder if migraine sufferers get in a cycle of adrenal stress from med side effects and lack of sleep, (poor sleep hygeine etc..) My gyno (hormone specialist) actually started me on a very low dose of prednisone years a go to see if it helped w inflamatory issues/migraines but it was too hard on my gut) I hope this treatment gives you some relief. It would be wonderful if it does. I know this time of year is tough on everyone- it makes eveything crazier as life and schedules ramp up. My prayer has become "please God-don't let me have a headache tonight". Blessings to all, Lulu💓

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Hi, @lulu1962 – I happen to take spirinolactone, but I don't experience nocturnal hypnic headaches (or other type of headache). Here is some information on the side effects of spirinolactone: https://www.mayoclinic.org/drugs-supplements/spironolactone-oral-route/precautions/drg-20071534.

Sounds like you are going to see the neurologist tomorrow, @lulu? Are you planning to discuss the possibility of hypnic headache?

@shaylala – you mentioned you'll be starting a round of prednisone. How do you typically do on that medication?

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@lulu1962

Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms are definitely similar. Have you had any success with prednisone treatment? I meant to tell you I had a Dr. (mayo trained and Rheumatologist) who once treated me with IV steroids as I
was in the middle of a severe migraine attack. It is considered recue or breakthrough treatment and it worked, He had an infusion center and fortunately it was easily accessible. I do think there is a possible link in having adrenal fatigue (hypoadrenia) and hormone levels possibly affecting sleep hormones etc… I wonder if anyone in this group takes Spironolactone, (I'm on 100mg for Bioidentical HRT – fluid retention) Could there be any problem there? Also- i drink a lot of water daily. I don't drink coffee or tea or really anything other than water. I have a dry mouth related to RA and I even worry if I'm drinking too much wter?? I just wonder if migraine sufferers get in a cycle of adrenal stress from med side effects and lack of sleep, (poor sleep hygeine etc..) My gyno (hormone specialist) actually started me on a very low dose of prednisone years a go to see if it helped w inflamatory issues/migraines but it was too hard on my gut) I hope this treatment gives you some relief. It would be wonderful if it does. I know this time of year is tough on everyone- it makes eveything crazier as life and schedules ramp up. My prayer has become "please God-don't let me have a headache tonight". Blessings to all, Lulu💓

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@lulu1962 I took Spironolactone prior to my liver transplant along with another diuretic (I gained 35 pounds of fluid in 6 weeks). I had no problem from it and I was headache prone, but the headaches (migraines) ended with menopause, thankfully, so that is possibly why I didn’t have a problem. Interestingly, my migraines were almost all left sided also. Occasionally, when one was winding down, it would suddenly switch to the right side!
I can almost feel your pain, I hope you find some relief soon. That’s disappointing that the best migraine medications don’t help.
JK

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@lulu1962

Hi @shaylala -I'm wondering how you are doing? Thank you for the response and our symptoms are definitely similar. Have you had any success with prednisone treatment? I meant to tell you I had a Dr. (mayo trained and Rheumatologist) who once treated me with IV steroids as I
was in the middle of a severe migraine attack. It is considered recue or breakthrough treatment and it worked, He had an infusion center and fortunately it was easily accessible. I do think there is a possible link in having adrenal fatigue (hypoadrenia) and hormone levels possibly affecting sleep hormones etc… I wonder if anyone in this group takes Spironolactone, (I'm on 100mg for Bioidentical HRT – fluid retention) Could there be any problem there? Also- i drink a lot of water daily. I don't drink coffee or tea or really anything other than water. I have a dry mouth related to RA and I even worry if I'm drinking too much wter?? I just wonder if migraine sufferers get in a cycle of adrenal stress from med side effects and lack of sleep, (poor sleep hygeine etc..) My gyno (hormone specialist) actually started me on a very low dose of prednisone years a go to see if it helped w inflamatory issues/migraines but it was too hard on my gut) I hope this treatment gives you some relief. It would be wonderful if it does. I know this time of year is tough on everyone- it makes eveything crazier as life and schedules ramp up. My prayer has become "please God-don't let me have a headache tonight". Blessings to all, Lulu💓

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@lulu1962 @lisalucier – I started the Prednisone taper on 11 December. 42 tabs 10mg. I'll complete dosing on 22 December. Prior to starting the Prednisone I think the other meds had thrown off the timing of the headaches, so rather than waking me at a specific time, they were more random and not quite as severe, but was feeling generally achy along with a constant feeling of shakiness. I have tolerated Prednisone pretty well in the past, when taken for extreme cases of poison ivy and a lengthy battle with hives following a surgery. This round, after day 2, the headaches completely ceased and I've felt much better with the exception of the shakiness, a little fluid retention and elevated blood pressure. I expect the fluid retention and blood pressure will return to normal after I complete the dosage and, if true to form, I expect a week or 2 of feeling generally lousy while my body takes back over to produce cortisol. I'll keep you posted on what effect it has on the Hypnic Headaches. So far so good. @lulu1962, have you tried any caffeine or melatonin prior to sleeping yet? They worked more often than not for preventing the headache for me…at least while sleeping. Also, I've never taken Spironolactone. Prayers for us all to regain happy healthy lives.

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Wow, after all these years actually finding a diagnosis for these headaches! Reading all these posts was a reflections of my life: I’m 68, female, had migraines since teen years, felt great for a couple of years during menopause then, wham, the nighttime headaches began. I tried everything the neurologist threw at me and some worked for a period of time, until they didn’t. Had scans, sleep studies. Finally relented to their recommendation of Botox about four years ago and am still on it (no longer receiving shoulder or neck injections which has created problems for me). Have also been on Topiramate about 6 yrs. Botox took over a year to kick in, then worked fantastically, not so great the past 18 months. Usually have pain five nights a week, but it’s NOT as bad as before and I sleep with an ice pack every night and put it over my eye/forehead at first indication of pain. Do I like subjecting my body to Botox poison? No, but I also don’t like hanging over a toilet throwing up in unbearable pain either. None of the pain meds worked and the older you get the less my doctors want to give them to you. Some of the new meds on the market remain untested with older women according to reseach I’ve done (which the doctors do Not tell you), and though my Neuro office was really pushing me towards it because their trial run was positive, they now have told me to wait. My very, very, unofficial observation has been that a lot of migraine sufferers have sensitive systems.
I’d like to get off both, shouldn’t be on Topiramate, never should have since I have osteopenia and now osteoporosis in areas. Tried weaning off Botox once and that was a mistake……

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