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.

Liked by teach

I too suffer from hypnic headaches, self diagnosed. I first experienced these headaches at 44 and am now 56. My experiences are similar to others on this board, so to cut to the quick, I should have stock in generic caffeine pills! I take 100 mg a night and for most nights experience no pain. However, I may wake about 2:00 with a slight headache, take another 50 mg (as best estimated due to cutting pills), and sleep sound after that. Any morning that I do wake with a headache, it is mild compared to my pre-caffeine days. I have also found I can eliminate any remaining pain with a run.

I read a white paper by a researcher in Brazil who thinks there is a connection between hypnic headaches and too much adenosine being produced by the body. Considering how quickly I fall asleep at night, I find this plausible. Adenosine is a sleep hormone and too much of it apparently can cause blood vessels to dilate, causing the pain. Caffeine fits the same receptors as the adenosine and thus blocks the adenosine. Either way, there is much work to be done and I would participate in research trials if something were close to Michigan.

Liked by taterjoy, meme59

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@taterjoy

@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!

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Hi, @taterjoy — thinking of you and wondering how it's going with the nocturnal hypnic headaches?

Liked by taterjoy

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Hello. I’m new here and have been taking in the great conversations of this sight. But on this subject I had to reply. Migraines were a continual fact of my life. I have tried so many of the therapies mentioned on this thread. Some of the triptans were somewhat helpful but never totally successful. I had a course of Sphenopalatine Ganglion Blocks, Botox, but nothing worked. Somehow they eventually turned into “alarm clock” (hypnic) headaches. I was prescribed Verapamil but this caused heart issues.
I then moved to Atlanta and started going to Emory. I found a solution. They gave me a “Greater Occipital Nerve Block”. This isn’t a cure but a relief. I received 2 shots in the back of my neck where the Occipital nerves begin and spread across the brain. I HAVE NOT HAD A HEADACHE SINCE!!

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@gussie

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.

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You’re describing my life Gussie. I’m so sorry for you and so depressed for us both. I don’t think I can live with this pain for years. Every night is torture.

Liked by taterjoy

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@taterjoy

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

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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.

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@patiencepie

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.

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Hi, @patiencepie – I can see the extreme pain with the hypnic headaches you are experiencing throughout your words about it. I hear that this quality of life is not sustainable for you.

Hoping members in this discussion here like @leamm @so4tune8 @bernese53 @taterjoy @kdubois and @dawn_giacabazi will return and offer some insights on your situation with the horrible pain and then the medications destroying your waking life.

Have you gotten to talk to your neurologist at your regional headache clinic in the last couple days about how excruciating your pain is, how your waking life is affected and how the reality of life dominated by pain is not seeming doable for you?

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@patiencepie I did not have hypnic headaches but I did have very severe migraines that lasted 3 days, occasionally four, once or twice a month, coinciding with ovulation and menstruation. As with you, the pain was excruciating. I too was desperate. Back then we didn't have the internet (my migraines finally stopped about 15 years ago, so I researched everywhere I could — the library, reading books in bookstores, everything. I read somewhere that most migraine sufferers know more about them than most doctors do, unless the doctor is a real specialist, and I believe it.

One of the things I remember reading about is rebound headaches. Is it possible that the medications you are taking could be causing them? Your body gets so adjusted to the medications that when they wear off it all starts all over again, if I recall correctly, and it sounds as if that's what's happening to you.
I hope you can find a real specialist, a doctor who knows the absolute most about these headaches. I was fortunate that mine were never more than two times a month, but even that made my life miserable, it was impossible to plan ahead for anything. I did have some lesser, more manageable, headaches in between the migraines, more like minor migraines, brought on by certain foods. The two worst foods were raw onions and chocolate. I could eat white chocolate but not regular.

I will be thinking of you and hoping for you to find relief from your pain. My daughter goes through this now with migraines but often the current medications can give her some help although they do not seem to totally take the pain away, there is a lingering lesser pain. When she is going through one she often calls me, knowing I can sympathize and of course I feel terrible when she does, knowing exactly what she is feeling.
JK

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I began getting morning headaches at 55 for the first time with the beginning of menopause that were easy to cure with my morning coffee and getting up.I eat well exersize,am happy and relaxed.Later I got the classic 2 or 3 am headaches, that only Excedrin would cure.They progressed to nightly and with more pain.I noticed a monthly cycle that matches the moon with regards to the intensity.
Even though I am post menopausal now at 60, they have not gone away. I tried 3 preventative drugs with no response , accupuncture and every supplement possible. I was first diagnosed with cronic Migraines but now they label me with a Hypnic Headache. I think my circadian rythmn is off from lack of sleep and hot flashes as well as many trips overseas.I sleep better with eye shades.Recently I tried a caffeine pills before bed and melatonin.So far it's working and I am glad to be off Excedrin.Time to give my stomach a rest. I even feel less bloated and swollen from the improvement with inflammation.Crossing my fingers it continues for a whole month.
I would love to connect with anyone else who is studying this too.

Liked by taterjoy

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@meme59

I began getting morning headaches at 55 for the first time with the beginning of menopause that were easy to cure with my morning coffee and getting up.I eat well exersize,am happy and relaxed.Later I got the classic 2 or 3 am headaches, that only Excedrin would cure.They progressed to nightly and with more pain.I noticed a monthly cycle that matches the moon with regards to the intensity.
Even though I am post menopausal now at 60, they have not gone away. I tried 3 preventative drugs with no response , accupuncture and every supplement possible. I was first diagnosed with cronic Migraines but now they label me with a Hypnic Headache. I think my circadian rythmn is off from lack of sleep and hot flashes as well as many trips overseas.I sleep better with eye shades.Recently I tried a caffeine pills before bed and melatonin.So far it's working and I am glad to be off Excedrin.Time to give my stomach a rest. I even feel less bloated and swollen from the improvement with inflammation.Crossing my fingers it continues for a whole month.
I would love to connect with anyone else who is studying this too.

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@meme59 glad to hear you are finally getting some relief. When I had migraines caffeine did help too, and back then it did not interfere with my sleep. Now it does.
JK

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I am a 62 year old female in otherwise excellent health at 5’5”, 120lbs. I exercise regularly and have a decent diet. I began experiencing hypnic headaches the end of August 2018. They began waking me every few nights with severe pain in left side of head only. I tried Zomig which I have on hand for occasional migraines but it did nothing. I would sit and hold an ice pack to my head for hours, and start drinking coffee. Doctor put me on Amitriptyline and scheduled an MRI but couldn’t get in for weeks. She also prescribed a strong pain med that didn’t help. They got so severe after the first few weeks and woke me every night about 2:30 that we finally went to the emergency room. They did 3 different MRI’s and a CAT scan which ruled out our worst fears. Met with neurologists, and luckily found this post one night while up with pain and desperately seeking answers. My neurologist confirmed the Hypnic headache classification. I began taking Melatonin, along with Amitriptyline which disrupted the regularity of the headaches but did not stop them. Found caffeine and exedrin migraine help the pain per suggestions found here. The neurologist added Topomax as a preventative. Although the headaches became less frequent and somewhat less severe, the side effects of the medication left me shaky, cloudy thinking, and feeling pretty awful most of the time. I went to a chiropractor too since I do have back and neck issues, and while he helped those issues it had no effect on the headaches. However, I had discontinued estrogen therapy several months ago and thought this could be related. After having a hysterectomy at 52, I had started bio-identical estrogen therapy which greatly reduced the number of migraines I was getting pre-menopausal. I started estrogen patches at a lower dose last week and began weaning myself off the other meds. I haven’t been awakened by a headache since and am down to 5mg Melatonin (from 12mg) completely off the Topomax and only took 1/4 of the 50mg Amitriptyline last night. I feel so much better today I’m beside myself. I will keep you posted if anything changes. I wanted to share this since your suggestions helped me through such a terrible and frightening time.

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@shaylala

I am a 62 year old female in otherwise excellent health at 5’5”, 120lbs. I exercise regularly and have a decent diet. I began experiencing hypnic headaches the end of August 2018. They began waking me every few nights with severe pain in left side of head only. I tried Zomig which I have on hand for occasional migraines but it did nothing. I would sit and hold an ice pack to my head for hours, and start drinking coffee. Doctor put me on Amitriptyline and scheduled an MRI but couldn’t get in for weeks. She also prescribed a strong pain med that didn’t help. They got so severe after the first few weeks and woke me every night about 2:30 that we finally went to the emergency room. They did 3 different MRI’s and a CAT scan which ruled out our worst fears. Met with neurologists, and luckily found this post one night while up with pain and desperately seeking answers. My neurologist confirmed the Hypnic headache classification. I began taking Melatonin, along with Amitriptyline which disrupted the regularity of the headaches but did not stop them. Found caffeine and exedrin migraine help the pain per suggestions found here. The neurologist added Topomax as a preventative. Although the headaches became less frequent and somewhat less severe, the side effects of the medication left me shaky, cloudy thinking, and feeling pretty awful most of the time. I went to a chiropractor too since I do have back and neck issues, and while he helped those issues it had no effect on the headaches. However, I had discontinued estrogen therapy several months ago and thought this could be related. After having a hysterectomy at 52, I had started bio-identical estrogen therapy which greatly reduced the number of migraines I was getting pre-menopausal. I started estrogen patches at a lower dose last week and began weaning myself off the other meds. I haven’t been awakened by a headache since and am down to 5mg Melatonin (from 12mg) completely off the Topomax and only took 1/4 of the 50mg Amitriptyline last night. I feel so much better today I’m beside myself. I will keep you posted if anything changes. I wanted to share this since your suggestions helped me through such a terrible and frightening time.

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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

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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Hi, @shaylala – welcome to Mayo Clinic Connect. Sounds like your pain is truly horrible — skull-crushing, as you mentioned. I am glad that some of the posts in this discussion were helpful.

Hoping that @patiencepie @meme59 @so4tune8 @dawn_giacabazi @gussie @cherylsd @lauriedr @kdubois may have some input, since you've found estrogen wasn't the answer for your severe nocturnal hypnic headaches and you've had to discontinue the Amitriptyline and Topiramate (Topomax). @johnbishop may also have some thoughts for you.

@shaylala – have you gotten to ask your doctor what to try next at this point? Is so, what did he or she recommend?

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Hi, @shaylala – I would like to add my welcome to Connect along with Lisa's @lisalucier. I can't imagine being woken from sleep by a headache. I've had migraines in the past but nothing that occurs on a regular basis. I did find a few articles on hypnic headaches but I'm not sure it they are helpful.

NIH – Hints on Diagnosing and Treating Headache
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5974268/

Mayo Clinic Research Output – The hypnic ('alarm clock') headache syndrome
https://mayoclinic.pure.elsevier.com/en/publications/the-hypnic-alarm-clock-headache-syndrome

Mayo Clinic Proceedings – Diagnosis and Management of Headache in Older Adults
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30871-6/fulltext

Hope you find some answers soon.

John

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@lisalucier

Hi, @shaylala – welcome to Mayo Clinic Connect. Sounds like your pain is truly horrible — skull-crushing, as you mentioned. I am glad that some of the posts in this discussion were helpful.

Hoping that @patiencepie @meme59 @so4tune8 @dawn_giacabazi @gussie @cherylsd @lauriedr @kdubois may have some input, since you've found estrogen wasn't the answer for your severe nocturnal hypnic headaches and you've had to discontinue the Amitriptyline and Topiramate (Topomax). @johnbishop may also have some thoughts for you.

@shaylala – have you gotten to ask your doctor what to try next at this point? Is so, what did he or she recommend?

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Thanks for your comments Lisa. My neurologist is suggesting a round of Prednisone next. She would try the Occipital Nerve Block but my insurance won't cover that…although I'll be asking what it will cost if the Prednisone doesn't help. I was intrigued by leamm @leamm comments on Adenosine. I normally have no difficulty falling asleep and have never been a "morning person", finding it difficult to jump up and get going…so maybe I do have an abundancy of this sleep hormone. I wonder if others with these headaches might, as well.

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@shaylala

Thanks for your comments Lisa. My neurologist is suggesting a round of Prednisone next. She would try the Occipital Nerve Block but my insurance won't cover that…although I'll be asking what it will cost if the Prednisone doesn't help. I was intrigued by leamm @leamm comments on Adenosine. I normally have no difficulty falling asleep and have never been a "morning person", finding it difficult to jump up and get going…so maybe I do have an abundancy of this sleep hormone. I wonder if others with these headaches might, as well.

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

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