Very Rare Hypnic Headache (waking you from sleep)

Thanks, Nancy.  I am praying that his insights lead to more days of feeling "among the living!"

Hope you are having a great day.

Clemmie

HI Margarite:

I am so sorry you are having such a bad time with your headaches.  I am not a physician nor one of the moderators of this site, and they may have more insights into a "differential diagnosis" for what you are experiencing.  But I will there may be several things going on.  You might have infection/absess which can cause headaches.  You could have a temporary swelling/inflammation (worse during reclining position?) that could be increasing your intracranial pressure, thus causing your headaches. 

Also, you may be dehydrated.  I once had a two-week long headache after surgery, and no one had told me that the anaesthetic/pain meds I was one were dehydrating.  I drank a gallon of water the day someone enlightened me (I usually drink about 6 glasses) and felt better by the next day.

Your question about caffiene:  for people with hypnic headaches, nocturnal caffeine even up to 8 cups before bedtime does not seem to disrupt sleep.  From what my neuro told me, others might be overstimulated and unable to fall or stay sleep.  People with hypnics who can ONLY take caffeine (can't take lithium or Indocin SR), they may need to get up frequently to urinate, but otherwise it does not disrupt their ability to fall asleep.

I hope this helps and I hope you get some relief soon.

Clemmie

Hi Clemmie, Thank you for your input about my headaches,I have been reasearching it all day,and I may have found an answer, I have been taking a lot of Advil for the pain of Root canals and work I have had doneat the Dentist, it started all round that time, now if I combine that with a couple of cups of Coffee per day a couple of cups of Tea, a piece of Chocolate, a soda, I Have probably been going round Loaded with Caffeine,the last few days I havent needed the Advil and cut back on sodas etc, what may be happening is what I discovered is called Rebound Headaches, its a withdrawal headache,anyway I have cut the caffeine a lot today and I may get a headache tonight /morning, and for a few Days till I have got over the With drawal symtoms. So Clemmie I am going to run with that at the moment and see what happens, Margaret

Hi Margaret:

You may be right!  I didn't know you were ingesting lots of caffeine, but it can make some people have worse headaches, especially if they are taking in large amounts.  Some people actually benefit from a little caffiene during a migraine, but according what I have learned from this site, only if they don't usually take in much caffeine routinely.   Some people have to avoid it altogether.

And you are also right that you may be having rebound headaches from too much advil!  You have done some great research.

I avoided all caffeine for about 3 years (maybe 10 years ago) to determine if it had any affect on my hormonal migraines.   Avoidance had no impact on my hormonal migraines (frequency or intensity) so I now enjoy one cup of coffee every morning, and an occasional chocolate dessert (no sodas).  Since my hypnic headaches are fairly well controlled on Indocin SR nightly, I dont' use caffiene to prevent those.  I take Depakote ER nightly (an antiseizure drug used to prevent migraines) and it has helped diminish the number of hormonal migraines I experience each month (down from almost daily at one time to about 6-8 days per month;  life is good!).

I hope you are on the right track adn that you start to feel better soon.  Having headaches day after day not only hurts, it is very frustrating and can be depressing.   It can also be scary because we begin to think about serious "causes".  Only rarely are serious causes the culprit, thank goodness!   Please keep me posted--I will hope and pray that you are turning a corner toward better wellbeing.

Clemmie

Thank you Clemmie, I woke as usual, too early ,but the headache was not as bad as the night before,today I cut back but I did have a coffee and half of one, and 2 squares of Choc lolate, so we shall see tonight if I wake too early with a head ache, I have to add I have always only slept  6 hours if I am lucky, mostly 5 hours ,and I have had some Anxiety for a couple of Years, I am battling that the Natural way and trying differant Natural Remedys ,some do work but have side effects so I trying hard to self help myself. It was having the teeth pain that made me take a lot of Advil and the Dentist gave me 600mg Tabs, I should have thought of that , but didnt know you got Withdrawal from Caffeine, till I read about Rebound yesterday on the Internet. Its interestin g any way and I felt so happy I found the answer.Is this just a Migraine site or are there others for differant ailments(if I get any,LOL)Margaret

Hi Margaret:

I'm glad your headache was not quite as bad this morning.  And I hope it gets better as you either cut back on the Advil and/or the caffeine.  Did you try drinking more water?   Also, I had a friend who couldn't take in chocolate later in the day or she would awake with a migraine the next morning, whereas if she ate a wee amount in the morning she was OK.  You could try keeping a diary (foods, events, weather, etc) to find out what factors may contribute to your headaches.  There is information about the diary somewhere on this website.  Maybe one of the moderators more familiar with the "tools" will write to you.

This site is specifically for headaches (not just migraines) but from time to time there will be posts regarding illnesses that are frequently seen in tandem with migraines/headaches, such as fibromyalgia.  If you are experiencing other ailments, there is a website called www.about.com and if you go into and select "health" you will see many health topics listed.  Some are better than others, but you will be able to tell immediately whether the particular "illness" that you select is being updated regularly.  Mayo Clinic and Cleveland clinic also have websites (as well as many other clinics) that discuss specific illnesses.

I used to sleep 5-6 hours per night (my whole life) until I started taking Indocin SR and depakote. Now I am sleeping 7-7 1/2 hours, and when we tried to increase my depakote dose I was waking "hung over" and wanted to sleep 8-9 hours (highly unusual for me).   I hope you get some needed rest and that your headaches improve.  And I hope your root canals were a success!

Clemmie

Dear Lennie:

THank you SO much for writing and sharing your experience with migraines, hypnic headaches, and cluster headaches.  I am so sorry that you lost your career, and had to have the two surgeries.  Whatever "chemically" happened to your body to cause all this sounds very mysterious.  It is really a miracle that you were able to meet with the neurologist who had just left Mayo, who correctly diagnosed your headaches.

I hope you are on the path to healing, and it sounds as if you are.  You mentioned Gluten allergy--would you mind sharing with me what exact type of test(s) your MD ordered?  I have been thinking about this testing as I also have several autoimmune diseases (no family history) and I have read that sometimes gluten sensitivity causes severe headaches and also sometimes other autoimmune diseases.

The caffiene did not help me, but I am still taking Indocin SR nightly, EXACTLY two hours before I go to bed.  If I take it earlier, there is not enough in my system when I wake in the morning and I wake to a hypnic headache.  If I take it less less than 1.5 hours close to bedtime, I wake up about an hour and a half after falling asleep, with a terrible hypnic headache.  So I have to time it just right and HOPE that I fall asleep during the right time.

I am sorry that you had side effects to so many preventatives.  I had tried about 30 preventatives (or combinations) for the migraines and now take Depakote ER (an antiseisure drug).  While I still have about 8-15 days of migraines per month, at least they now will respond to a triptan (one or two doses).  If I don't take the Depokote ER, my headaches will not respond to the triptans.  So it is helping.

I have never met anyone else who had hypnic headaches, until you wrote.  Do you know what caused yours or did your physicians speculate?  I read all the medical studies about Hypnics (the first report dates back to 1977---there are only about 80 cases documented in the world literature).  It was found in a retrospective study that many with hypnics either had a history of uncontrolled migraines, a history of "shift" work, a history of smoking and lung complications, and/or a history of travelling frequently across time zones (or, moving across time zones).

There was a three year period in which I had daily "migraines," but getting diagnosed and treated for hashimotos thyroiditis cut my headache frequency from 30 days per month to 15. 

I hope you are truly on the road to recovery and can get your life back.  I am so sorry that you lost your job, and I hope the tumor in your shoulder was benign.  Again, I am so appreciative that you wrote--I live in California, and if the neurologist who treated you and diagnosed HYpnic headache is in my state or any state nearby, I would be greatful for their name. 

Clemmie

Hello again, I started to write before but something went wrong with the computer,so don't think my full reply got through, if any.

The tumor in my shoulder was benign, I thank God for that. In 1986, I had a hysterectomy; shortly after leaving the hospital,  I developed a rare infection that went through my whole body( the dr. had seen only one other person to have this), I was so sick that he did a house call every day for a week and I had to have a needle in my derriere each day. I didn't go back into the hospital as I was divorced and had custody of 3 children - 8,10 & 11 - so my parents moved in with me. I ended up being sick for 6 months instead of the usual 6 weeks. This is when my body went awry and I ended up having what is called a bipolar episode( at 37 yrs. old, had no family history of that sort). The dr. said the surgery and complications & resulting illness had caused my body chemistry to change that much. I have been on Lithium since and fine.

My body has never been the same since, though, healthwise I had been fine till 2001 when the migraines started as I previously wrote to you. There is no reason for the hypnic headaches/migraines that doctors will state. I usually do only get them when I sleep and wake up during the night or early morning, but they used to last then all day.

I am only the second person that the top neurologist in our area has seen have this kind and I am the youngest person. The other neur. has said that I have cluster headaches on top of them. Sorry, I can give you the name of the best neur. we know, but he lives in Toronto, Ontario as I live in Canada. His name is Dr. John Edmeads - he is a recognized migraine specialist in neurology in Ontario, has writtne many article for magazines and as I said in my last email, he often went to the Mayo Clinic for seminars.

It was a nutritionist/fitness expert at my husband's place of work( Aquired Brain Injury Clients) who suggested to  my husb. that I might be gluten intolerant due to the surgeries, traumas, etc. after I had spend 3 days in bed in Oct.( traumas - my 19 yr. old and 16 yr. old daughters were in a freak car accident and my 19 yr. old died instantly, my 16 yr. old was seriously injured; a yr. later my sister's 14 year old died in an accident on a bad winter's night here; in 2001 we homecared my stepson with a brain tumor and my mom died 3 months later from cancer). It seems that with serious surgeries and trauma, your body chemistry can change even more - we didn't know as an adult, it could change that much. So, that's when  I went on a gluten-free food plan, now have over 150 recipes( I love to cook!),

went from the 30 mig. in Nov. to 20 in Dec. and then down to 8 in Jan. and Feb.! The only way a dr. would test for gluten intolerance for sure, is if I would go back for a few weeks, eaten a lot of food with gluten in it and see if I felt worse again. I think they can then do a blood test, but can't now as I don't have any gluten in my body anyway. I'm not about to do that, as I am getting so much better.

I have also found out that I can't eat ice cream, yogurt, drink ordinary milk( use almond milk for baking, cooking, on food, etc.). Sometimes lactose intolerant goes along with gluten intolerance. I can have a little milk in my tea or a little in baking, but try not to.

After doing some recent research, I have found out that although I was taking Lithium for another reason, it is one of the best things for migraines, and works best if taken 1 - 2 hrs. before bedtime. I was usually taking it in the afternoon. In the last few days, I have taken it around 10:00 p.m. and then the caffeine pill when I go to bed and have wakened in the mornings feeling good. Even something bad like my illness of over 20 yrs. ago has turned into something good for me now(Romans 8:28), as I use that medicine for the headaches.

I am fine now with not working - I loved my career, teaching Gr. 8 13 & 14 yr. olds, but now I tutor children in my home from Gr. 2 - 8(my husband calls it my 'teacher fix') and all the parents are great at rescheduling if I don't feel well.

The main thing is that we trusted God and knew He didn't want me to stay sick forever, so we would never give up till we found some answers. We are very grateful for all the days I feel well now, and being back in the "land of the living" is worth not being able to eat all the foods I would like to.

Hope some of this helps. Best wishes for your continued struggle with your health. God bless.

Dear Lennie:

I can certainly see why your body chemistry went through a terrible crises, due to your tumor, your surgeries, the resulting infection (sounds like sepsis), the loss of your child, other illness in your family, and raising the children on your own.  You are a survivor! 

It is amazing that your neurologist was able to correctly diagnose your migraine, cluster, and hypnic headaches.  Thank you for his name.  Lithium (I realize you started taking it for other reasons) is supposed to be the BEST treatment for hypnic headaches, and taking the caffeine in concert before bedtime does also help.

I am taking indomethicin SR (Indocin) 2 hours before bedtime every night. If I take it too early, I wake up in the morning at about 4:30am with an excruciating headache because the dose doesn't "last."  If I take it too close to bedtime (within one hour), I wake up about 60 minutes after falling asleep with an excruciating headache, because the drug does not have "time" to get into the blood-brain barrier unless I take it 2 hours in advance.  Sometimes when I am having the hypnic headaches several nights in a row despite medication, I add several cups of coffee before bedtime.  Sometimes I have them regardless of what I do!

I also take preventative medication for hormonal migraines (Depakote ER), but I still have migraines about 12-15 days per month during menses.  My problem arrises when I sometimes have a terrible hormonal migraine in the evening that suddenly begin and progresses, and does not respond to any migraine acute medications (like maxalt, fiorinal, etc).    Then, my nausea and/or vomitting prevent my body from absorbing the Indocin SR and caffeine, and I am severely ill all night.  If I take a narcotic (the only one they will give me is a nasal called STadol), I get even more sick (vomitting/diarreah) and end up in the emergency room.  It is such a vicious cycle.  Then the intense nausea and headache last all week for which I take ginger (a form which patients on chemotherapy eat for nausea) which helps some.  The anti-nausea and anti-vomitting drugs (by mouth or suppository) have not helped at all, before, during or after the headaches.

I am so intrigued by the gluten connection, and have often wondered if I might have the allergy even though I have never had GI symptoms after eating during the times of the month when I don't have migraines.  Is there a website where you found the gluten-free recipes, or a book?  I can do a google search adn give it a try.  Thank you so much for responding.  I am so sorry you have had so many setbacks, and I hope your body is healing, and your spirit is much happier.  You are so right about divine intervention!   You are the only other person I have "met" with hypnic headaches, and I do appreciate your helpful information.

God Bless you,

Clemmie 

PS.  Lennie--please see my other reply sent today. I just looked up your specialist Dr Edmeads in Toronto.  He was THE top headache specialist in all of Canada, and president of an international headache society.  Sadly, he passed away in 2006.  There is an amazing tribute to this physician (also a migraine sufferer!) at this website http://www.americanheadachesociety.org/inmemoriam/index.asp?print=y   If it is not allowable for us to post a website (and it gets erased) merely search his name in "google" and the memorial article and testimonies will come up.  What an incredibly accomplished physician/researcher, and well-loved.  Clemmie

Hello again,

We are so sorry about Dr. Edmeads - I hadn't seen him since he had diagnosed the hypnic headaches and told me about using coffee or the caffeine pill at bedtime( about 5 yrs. ago). I was so fortunate that my specialist in Hamilton had him come to see me!

Truly a remarkable man.

Sorry you are having so much difficulty with your migraines. At least when I get one now, I really know the bad days are a lot less than my good days. Going from 20 mig. to only 8 is like a miracle. I believe they'll even get less if I keep on this gluten/lactose intolerant food plan I've been on. Glad I love to cook, we go to a lot less restaurants now.

In order to get my recipes, I just print in recipes - gluten free and a whole lot of websites come up to search. Then I do the same for lactose free recipes. Today I looked up substitutes for dairy products and got a lot of good ideas as well.

Best wishes for your future.

HI again, Lennie!

Wow, there are alot of recipes on the internet for Gluten Free eating!  Glad you love to cook--so do I.  I also look up recipes on another website called www.recipezaar.com and there are many groups of people with special diets who have forums.  I will also check that out.  Funny, I am also lactose intolerant!

So happy that your migraines are down from 20 to 8 per month.  I hope they are much less severe, and continue to decline.  Hope too cross paths again!

All the best,

Clemmie