Very Rare Hypnic Headache (waking you from sleep)

cking Community Member October 25, 2007
  • This is why it is crucial to see a migriane specialist if our headaches are refractory to treatment.  I have had migraines for years, and they became hormonally linked since puberty.  They were much worse and occured daily for several years before I was diagnosed with thyroid disorders at age 45, and put on Synthroid (cut the frequency and severity).  This year my regular monthly migraines (which used to last 5-12 days per month) became horrendous events lasting 21-26 days per month, beginning with menses.  Having recently moved across the USA, I lost contact with my prior migraine specialist, and starting seeing a new one two months ago.

     

    After charting two months of excruciating headaches following my migraines at menses (and waking me from sleep and not responding to ANY medications), I saw the specialist yesterday with my "charts."  He immediately recognized that my hormonal migraines were transitioning into a very rare type of headache called "Hypnic headaches" which wake you up at the same time in the middle of the night, can be mild to severe, and for me caused such intense vomitting and/or sustained nausea I have been losing weight.  While it is extremely rare to have them under age 65, I am 50.  While it is rare that they mimic migraines (light/noise sensitivity), mine do.  Supposedly they respond to lithium, indomethicin (Indocin), verapamil, and another calcium blocker, and caffiene but not at all to triptans, antiseizure meds, or fioricette. 

     

    Last night I took very high doses of Advil before sleep and during the night when I was wakened (I had not gotten my new RX's filled yet).  It helped.  Instead of awakening with a 9+ pain scale headache, it was about a 3 and I was only mildly nauseated. IndocinSR is a much more potent NSAID and long-acting, so hopefully it will help even more.

     

     And now that my specialist understands the excruciating pain that I was in for hours during the night (pacing 3-4 hours nightly, crying continuously, unable to sit or lay down, until I finally passed out from sheer exhaustion or from the balbutilol/halcion/triptan combo), he put me on several other things including Stadol nasal, a narcotic that works quickly (absorbed through bloodstream in nose) and not affected by massive vomitting.  There is hope for me or for anyone suffering from this rare form of headache, which in my case my specialist thinks is linked to the migraines.  The scanty medical literature sites REM sleep aberations, melotonin imbalance amongst other things as potential causes, but not enough studies have been conducted. 

     

    For anyone suffering headaches that wake then suddenly from sleep, apparently there are many potential causes (such as sleep apnea, temporal arteritis, cervical disk problems, brain tumor, brain hemorage, cerebral hypertension, migraines/clusters/continua); hypnic headache is only one cause.  I hope this helps someone out there who is experiencing "waking headaches" or "morning headaches" for whom routine meds dont' seem to help.  I feel that I now have hope.

  •  

    Thanks Teri for the info on how to work with an MD (I read it several times before going in yesterday) and for Nancy's ideas and support in figuring out this refractory headache.  If this new regimen does not work, the specialist said we would resort to hospitalization and investigation of other causes (My MRI showed no tumors). I am finally feeling hopeful for the first time in months.  Clemmie

     

     

54 Comments
  • Sue
    Sue
    Jul. 23, 2014

    I suffered for years with excruitiating headaches that started in the middle of the night. I would get 3-4 per week and have to get up to take my Rx and get an ice pack. I thought I had tried everything including Rx's, a change in diet, exercise, # hour of sleep, etc. Then I changed to to a firm pillow and made sure that my neck was in alignment with my spine....

    RHMLucky777

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    I suffered for years with excruitiating headaches that started in the middle of the night. I would get 3-4 per week and have to get up to take my Rx and get an ice pack. I thought I had tried everything including Rx's, a change in diet, exercise, # hour of sleep, etc. Then I changed to to a firm pillow and made sure that my neck was in alignment with my spine.  Never in a million years did I think that something so simple coud be the answer, but it worked.  I try not to let my neck fall forward or to the side. (I previously had a very soft, down pillow and slept with my neck curved toward my chest). There are pillows designed to keep your neck in alignment whether you are a side sleeper, sleep on your back or stomach. What a joy to sleep through the night!  I hope this helps someone.  Sue

  • Anonymous
    Velita Hill
    Jun. 23, 2014

    I am so happy that someone else knows how I feel.  I began having tension migranes in 2006, since than they have become several diff kinds.  I get monthly migranes, migranes during my mensis, if I think about something over and over in my mind I will get a migrane.  By far, the worse, are the ones I get the day of or after my monthly is...

    RHMLucky777

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    I am so happy that someone else knows how I feel.  I began having tension migranes in 2006, since than they have become several diff kinds.  I get monthly migranes, migranes during my mensis, if I think about something over and over in my mind I will get a migrane.  By far, the worse, are the ones I get the day of or after my monthly is over. Wakes me up out of my sleep, so as soon as I feel it I take the RelPax as advised, does not work! It takes hours for the meds to take affect, I throw up.  Fiorcet stopped working two years ago,  I mean as soon as my feet touch the floor the severity becomes unbearable.  I was told to take meds as soon as I feel the pain, but it still takes HRS N HRS for relief, waiting for relief sucks! I can't lay down, as I will vomit, I can't sit up, totally up, because I'm exhausted, can't stand light, sound or smell because I'll throw up even more.  Then after the episode is residing I will sleep literally ALL day.  My last one started at 3am I did not get to sleep until about 7 am. and slept all the day long.  This makes me cry which makes my head hurt even more.  What can help?

    • cking
      Jul. 23, 2014

      Hi Velita--I am so sorry you, too, suffer from disabling hormonal migraines.  I didn't see your post until today or I would have replied sooner.  Have you seen a headache specialist?  If not, there is a list on this site to help you locate one in your region.  I have had to drive as far as 8 hours to get to one at various times in my life,...

      RHMLucky777

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      Hi Velita--I am so sorry you, too, suffer from disabling hormonal migraines.  I didn't see your post until today or I would have replied sooner.  Have you seen a headache specialist?  If not, there is a list on this site to help you locate one in your region.  I have had to drive as far as 8 hours to get to one at various times in my life, but it is well worth it. 

       

      If throwing up prevents you from keeping your medications down (and then, they cannot help stop your migraine), you might consider non-oral options.  I have tried suppositories (to prevent the nausa/vomitting) but it's too late after the migraine has begun--they escalate quickly.  Below are a few ideas to run by your phsyciain. I hope you are seeing either a neurologist who is very experienced in headache management, or a headache specialist.  Otherwise, they may not understand your particular situation.

       

      Nasal sprays might help you when you have migraines that cause vomitting.  There are a few.  Please read about all the products on this site.  I personally had fairly good efficacy with DHE nasal spray, but after a year it started causing sinus infections so I had to switch to injections.

       

      Injections also bypass the need for your meds to be absorbed in the gut (as is the case with oral meds).  There are many different injectables available which you can read about on this site, or by doing a google search on the internet.  Triptans are available and so are some non-steroidal antiinflammatory agents (like Toradol  generic name ketorolac, which I use).  I hope you can get some help.  It is depressing when headaches interrupt sleep, and particularly when they escalate to the point of vomitting and/or diarreah.  It affects the whole day, or "days" if it does not remit.  I hope this helps. 

       

       

  • Amy Fogle
    Apr. 09, 2011

    I have been suffering with headaches that wake in the night.  Mine is pretty routine always around the same time everynight.  I can feel them coming on.  It feels as if someone is stabbing me in the left side of my head.  It goes from my temple, to the top of my head, down to the back of my head, into my jaw line and ear.  I have no...

    RHMLucky777

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    I have been suffering with headaches that wake in the night.  Mine is pretty routine always around the same time everynight.  I can feel them coming on.  It feels as if someone is stabbing me in the left side of my head.  It goes from my temple, to the top of my head, down to the back of my head, into my jaw line and ear.  I have no bad teeth or an ear infection.  But, always on my left side.  In the mornings when I awake the back of my neck down the left shoulder is throbbing for pain.  I have been to the hostipal, were they took a MRI and CAT scan but found nothing.  I don't know what else to do.  I can't keep living like this.  Yes, I have stress such as: kids, full time job and attending college but I am pretty good about handling stress.  I have tried Advil, nasal strips for my nose, and nose spray to ease the pain.  The only thing I have found to work is sleeping pills.  It is sad because that is the only way I can sleep through the night.  The headaches last anywhere from a half an hour to the other night which lasted two hours (finally passing out from the pain).  I am glad I am not alone that I am not going crazy, thank you all for having the guts to ppost your problem and helping each other with this rare problem.  Please help if you have any other suggestions for me.

    • Teri Robert
      Health Guide
      Apr. 09, 2011

      Amy,


      -:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-

       

      You don't have to live this way. Although there's still much that's not known about Migraine and other headache disorders, there's much more know now than even a few years ago, and mroe treatments available than...

      RHMLucky777

      Read More

      Amy,


      -:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-

       

      You don't have to live this way. Although there's still much that's not known about Migraine and other headache disorders, there's much more know now than even a few years ago, and mroe treatments available than ever before.

       

      It sounds like it's time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a headache and Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

       

      Getting to a true specialist was the real turning point for me in getting my life back.

       

      Please keep us posted?

       

      Welcome again!
      Teri

       

    • cking
      Apr. 11, 2011

      Hi Amy!

       

      Thank you also for having the guts to post your problem.  I do understand the frustration and pain involved in nightly awakenings and severe headache pain.  As Teri suggested, it is VERY important that you find a specialist who can diagnose your headache type.  The reason I say this is that the treatments for migraines and hypnic...

      RHMLucky777

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      Hi Amy!

       

      Thank you also for having the guts to post your problem.  I do understand the frustration and pain involved in nightly awakenings and severe headache pain.  As Teri suggested, it is VERY important that you find a specialist who can diagnose your headache type.  The reason I say this is that the treatments for migraines and hypnic headache are not the same (for most patients).  My specialist was treating my nocturnal headaches like migraines for months (to no avail) until he realized they were NOT migraines.  I am taking meds for both now, and the meds for the hypnics at least make my nights livable, and take the pain down to livable.

       

      I hope you are able to get to the root of your headaches and find something that helps.  You are definitely not alone.  I pray that you find some answers and some much needed relief.  Please do stay in touch and let us know what happens.  We all learn from one anothers experiences.  Clemmie

  • Anonymous
    SFLTracey
    Jul. 16, 2009

    Thanks for sharing your information. I have had migraines since I was 18 years of age. Now I am 42 years old. With a drastic change in diet I was able to go off two preventative meds I had taken for 13 years. What I have noticed though is I continue to get the migraines from sleep. Normally I wake in a deep sleep (anytime of the night) with one...wonder if...

    RHMLucky777

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    Thanks for sharing your information. I have had migraines since I was 18 years of age. Now I am 42 years old. With a drastic change in diet I was able to go off two preventative meds I had taken for 13 years. What I have noticed though is I continue to get the migraines from sleep. Normally I wake in a deep sleep (anytime of the night) with one...wonder if it is related to my intense dreams. I also get them when waking up in the morning. Once I walk around they normally go away although I may have a residual feeling of it throughout the day. I can't lay there or it will stay. Sometimes I need to take a pain reliever.

    • cking
      Dec. 04, 2009

      Dear SFL:

       

      I'm sorry I never saw your post until today.  I hope you are doing better and having fewer headaches.  When you have the waking headache, have you found that certain pain relievers help more than others?  If so, writing back might help others who post who are also having waking headaches who don't know how to treat them. ...

      RHMLucky777

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      Dear SFL:

       

      I'm sorry I never saw your post until today.  I hope you are doing better and having fewer headaches.  When you have the waking headache, have you found that certain pain relievers help more than others?  If so, writing back might help others who post who are also having waking headaches who don't know how to treat them.  My phsyciains have told me that when the Indomethicin fails (I take it before bedtime to prevent the waking hypnic neadaches) I have to take a narcotic if it is severe.  Otherwise, a very rapid acting anti-inflammatory works best.  I am using a liquid form of ibuprofen (600mgs), but people in other countries might have access to more rapid forms.  Here in the US we don't have an injectible anti-inflammatory that I can use at home (only in the hospital).

    • Anonymous
      sfltracey
      Dec. 04, 2009

      Hello. Since I posted in July I have had fewer waking migraines. I am not sure why. I've been trying to go off a medication I use to facilitate sleep (Xanax) in the past few months. I have been taking it for years. It do notice that I am prone to migraines when I don't take it. I probably need to allow my body to adjust and stay off it. I started...

      RHMLucky777

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      Hello. Since I posted in July I have had fewer waking migraines. I am not sure why. I've been trying to go off a medication I use to facilitate sleep (Xanax) in the past few months. I have been taking it for years. It do notice that I am prone to migraines when I don't take it. I probably need to allow my body to adjust and stay off it. I started eating sugar again due to a lot of stress. It is my emotional fix. Tongue out It is interesting to note that with the sugar back in my diet I don't have the propensity for headaches. I am thinking it was the artificial sweetener I took for years that contributed to my headaches. As for what I take to decrease or eliminate the pain, I still stick to Imitrex nasal spray. It is finally generic (sumaptriptan) but still is expensive.

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Does anyone think this is a contributing factor to my 3am headaches:

       

       

       

      I work my fanny off to try to make ends meet so I only get about 3-4 hours of sleep per night.  After a couple of hours of sleep I'm up with pain in one side or the other of my temple, eyebrow area.  At times I think I'm going to literally rub mny eyebrow off. ...

      RHMLucky777

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      Does anyone think this is a contributing factor to my 3am headaches:

       

       

       

      I work my fanny off to try to make ends meet so I only get about 3-4 hours of sleep per night.  After a couple of hours of sleep I'm up with pain in one side or the other of my temple, eyebrow area.  At times I think I'm going to literally rub mny eyebrow off. 

       

      Pushing:

       

      Do any of you get relief when you push on the spot that hurts?

       

      Close friends and family will call and often say "you have a headache don't you?"  they say they can tell in my voice even when I'm trying to act normal and not let them know.

    • cking
      Dec. 04, 2009

      That is far too little sleep--I am so sorry you are having to work so many hours to make ends meet.  Yes, if you read about headache triggers on this website (there is alot of good info on this website about triggers, lifestyle measures to improve headache status, and medical treatment) you will see that either too little sleep, too much sleep, and...

      RHMLucky777

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      That is far too little sleep--I am so sorry you are having to work so many hours to make ends meet.  Yes, if you read about headache triggers on this website (there is alot of good info on this website about triggers, lifestyle measures to improve headache status, and medical treatment) you will see that either too little sleep, too much sleep, and erratic sleep routines can impact headaches.  No wonder you feel so awful--you are not getting enough restorative sleep.  I hope your "routine" can change to allow you ample time for rest and sleep.

       

      As far as the "push":  you will also see that some people benefit from pressure to sore spots, and some benefit by using cold compresses to the forehead and/or back of the neck.  When I have hypnic headaches, I rub and "grab" my head for hours because I feel like it will explode if I don't "hold it tightly" with my arms.  It is excruciating.  For migraines, I benefit from rubbing nad pushing my temples and sometimes the back of my neck if I have been "tensely" positioned with a migraine that lasts too long.

       

      I hope you can take the time to read all the info on this website that Teri and Nancy have amassed from many reputable sources.  There is also a top migraine specialist who, along with Teri, will answer questions from patients about their headaches, symptoms, and/or treatment issues.  No one can make a definitive diagnosis or recommend treatment, but they can certainly point you in a helpful direction.

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      WOW!!!!!  I'm feeling lucky because some of you have multiple types of headaches.  For 24 years mine has never changed.  Always the same .................never has varied.  Not once.  For that I'm thankful.

       

      And I want to apologize if I'm sounding whiney or have painted a bad picture.  I'm an upbeat, happy, hyper, able bodied...

      RHMLucky777

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      WOW!!!!!  I'm feeling lucky because some of you have multiple types of headaches.  For 24 years mine has never changed.  Always the same .................never has varied.  Not once.  For that I'm thankful.

       

      And I want to apologize if I'm sounding whiney or have painted a bad picture.  I'm an upbeat, happy, hyper, able bodied gal who laughs all the time.  (except at 3:30am)

       

      Yeah, the inability to obtain health care doesn't seem fair but I'm used to it and certain things will work out.

       

      RE: Imitrex RX help.  I used to get coupons from the drug company for $20 of the script (9 imitrex + $270).  But they won't let you stay on that program very long.

    • cking
      Dec. 04, 2009

      Sorry to hear the imitrex drug "program" was not that helpful.  Maybe shop around to see if any of the other manufacturers help out more?  I know it is time-consuming.  If you post a question about it, maybe some others in this forum have had experiences with pharmaceutical company programs that were more helpful???? Good luck!!!

    • Anonymous
      Hurting in Indiana
      Dec. 05, 2009

      Slept longer than normal and NO headache!!!!!!!!!!!!!!!!!!  I had only 3 cups of coffee.

    • cking
      Dec. 04, 2009

      Thanks so much for the update and it is GREAT to hear that your headaches are not quite as bad as they were.  It is interesting that you are eating more sugar and less artificial sweetener.  I was using Splenda for a while last year and developed almost intractible constipation.  It took a while to figure out what was causing it, but after eliminating...

      RHMLucky777

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      Thanks so much for the update and it is GREAT to hear that your headaches are not quite as bad as they were.  It is interesting that you are eating more sugar and less artificial sweetener.  I was using Splenda for a while last year and developed almost intractible constipation.  It took a while to figure out what was causing it, but after eliminating it from my diet I was much better.

       

      I hope your headaches continue to "diminish" and I hope you can diminish the use of Xanax without any adverse consequences. 

  • Lennie
    Mar. 21, 2009

    Hello. I did not have a slightest headache until 7 years ago( at 53 yrs. old!). I had 325 bad migraines in 2004, had to retire early from a job I loved and was diagnosed by two neurologists(one who had just returned from the Mayo Clinic) with cluster headaches and hypnic headaches. 7 preventives were tried, I had side effects with all of them. I had surgery...

    RHMLucky777

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    Hello. I did not have a slightest headache until 7 years ago( at 53 yrs. old!). I had 325 bad migraines in 2004, had to retire early from a job I loved and was diagnosed by two neurologists(one who had just returned from the Mayo Clinic) with cluster headaches and hypnic headaches. 7 preventives were tried, I had side effects with all of them. I had surgery 2 yrs. ago for a tumor in my shoulder and had a complicated surgery in 1986. With all of that, the one neur. said my body chemistry had changed so much, the only suggestion they had was that I try coffee at bedtime( which I had never drank), I don't like it, so I do have 1 caffeine pill at night( has the opposite affect for me than others, lets me sleep, as I don't have even tea much and no pop). I have also become gluten and lactose intolerant, due to the changes in my body. The best help with my new food plan has been a naturopathic hygienist I saw. I am still affected by weather, lights, etc., but hopefully that will improve as my head can heal. I also need to watch being too active in activities, as I am an A-type personality when feeling well.

    I can't have NSAID's, so the only abortive I use, and it works great, is Zomig RapiMelt.

    I have been able to go from 20 migraines last Nov. to only 8 in each of Jan. & Feb., which feels like a miracle to me and as if I'm back in the land of the living.

    I trust God will see me through all this and one day I will feel great again!

     

    • cking
      Mar. 22, 2009

      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...

      RHMLucky777

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      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

    • Lennie
      Mar. 22, 2009

      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...

      RHMLucky777

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      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.

    • cking
      Mar. 26, 2009

      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...

      RHMLucky777

      Read More

      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 

    • cking
      Mar. 26, 2009

      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...

      Read More

      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

    • Anonymous
      Lennie
      Mar. 26, 2009

      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...

      RHMLucky777

      Read More

      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.

    • cking
      Mar. 26, 2009

      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!...

      RHMLucky777

      Read More

      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

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      I would be fine if I could afford the RapiMelts!!!  My doctor gave me samples and they worked wonderfully.  I have no insurance due to "past medical history". (migraines and kidney stones) and the sumatritans and their relatives are $30-$32 EACH!!!  Therefore, I seldom have them on hand when I need them.  Which is a few times a week.

       ...

      RHMLucky777

      Read More

      I would be fine if I could afford the RapiMelts!!!  My doctor gave me samples and they worked wonderfully.  I have no insurance due to "past medical history". (migraines and kidney stones) and the sumatritans and their relatives are $30-$32 EACH!!!  Therefore, I seldom have them on hand when I need them.  Which is a few times a week.

       

      Anyone else in this predicament?

       

       

    • Lennie
      Dec. 04, 2009

      Hi again,

      I'm so sorry that insurance is a problem. We do have a good insurance system, I believe in Ontario, with most jobs, that a portion of medical bills, medicines are paid for.

      I will you well, we are waiting and hoping that some company will come up with a generic for Zomig, the way they have for some other meds.

      My prayers are with you.

    • Teri Robert
      Health Guide
      Dec. 04, 2009

      Zomig is still under patient. It doesn't expire until November of 2012. Nobody can sell a generic before then. Sorry.

       

      Teri

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Thanks so much.  it helps just being able to see that some of you are getting relief.  I know someday my ship will come in. LOl  I just hope I'm not waiting at the airport. LOL

       

      Thanks again.

    • cking
      Dec. 04, 2009

      Hi Again!  My Kaiser insurance covers 9 maxalt melts per month, which is not enough.  I am also on preventative meds that do not prevent the migraines (or the hypnic headaches totally), and there are times where I am forced to purchase drugs beyond my coverage.  I am wondering if the AARP can help you figure out a way to get insurance, despite...

      RHMLucky777

      Read More

      Hi Again!  My Kaiser insurance covers 9 maxalt melts per month, which is not enough.  I am also on preventative meds that do not prevent the migraines (or the hypnic headaches totally), and there are times where I am forced to purchase drugs beyond my coverage.  I am wondering if the AARP can help you figure out a way to get insurance, despite a previous condition?  They have lobbied against that practice for years and they try to help people in need.  Some one in their organization might also know a link to people at specific pharmaceutcal companies that provide medications free (or at reduced rates) to people who cannot afford them.  It may be worth a try.  The American Assoc of Retired Persons has a website that might be of some assistance.  Good luck--I get so very ill if I can't get the maxalt or Frova, and face having to to to the ER which is even more costly.  It is a viscious cycle.  I hope you get some help and can find a means of obtaining free or reduced rate medications.

    • Teri Robert
      Health Guide
      Dec. 04, 2009

      You need to compare prices at different pharmacies. $30 - $32 is too high for ANY triptan tablet. Not to mention that you can now get generic sumatriptan. Please, do call and price at several pharmacies.

       

      Teri

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      CVS is where I get them for $32 per pill.  The other independently owned pharmacy gave me some slack over "you're going to have s" if you keep taking them  UGHFoot in mouth

       

      You're right.....I can get generic Immitrex now and they're just under $22/each.  Helps, but still too much at times.  Soemtimes I hear them say "we have to charge her the...

      RHMLucky777

      Read More

      CVS is where I get them for $32 per pill.  The other independently owned pharmacy gave me some slack over "you're going to have s" if you keep taking them  UGHFoot in mouth

       

      You're right.....I can get generic Immitrex now and they're just under $22/each.  Helps, but still too much at times.  Soemtimes I hear them say "we have to charge her the 'cash' price".

       

      You folks are all soooo kind.  Thank you so much.  Got my coffee out on the cabinet and going to start drinkin'. 

       

      I read that hypnic headaches generally start later in life.  I'm 46, but I swear to you in 24 yrs. I've never had a headache come on during waking hours.  I also failed to mention, although the docs say I have common migraine, I do not get an aura (obviously I'm asleep) nor do I have sensitivity to light or sound once I'm up and hurting.  If only 80 diagnosed cases it seems very unlikely that Hypnic is what I have but I'm certainly thinking it makes sense.

       

       

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Hey cking,

       

      I had a neurologist tell me the regulatory standard of only allowing 9 per month in the US is crazy.  He told me to take as many as I wanted....his words were "they eat 'em like candy in Europe".

    • cking
      Dec. 04, 2009

      Yes, I hear you!  My headache specialist in San Fransisco told me I needed to take triptans for about 15 days  per month (hormonal migraines that cause lots of vomitting and dehydration), even though we have been warned not to take too many.  He was using them preventatively before the clinical trials were completed that studied their use for...

      RHMLucky777

      Read More

      Yes, I hear you!  My headache specialist in San Fransisco told me I needed to take triptans for about 15 days  per month (hormonal migraines that cause lots of vomitting and dehydration), even though we have been warned not to take too many.  He was using them preventatively before the clinical trials were completed that studied their use for "prevention".  But unfortunately, my insuror will only pay for 9 maxalt per month.  We have found a way to prescribe those and Frova at the same time, so between two of them i am almost covered.  But there are usually a few days per month where nothing works.  But it is livable.

    • Teri Robert
      Health Guide
      Dec. 04, 2009

      Hope you don't mind, but I'm going to make comments on several things that have been siad, but make them all in this one comment...

       

      The odds against this being hypnic headache are staggering. That doesn't mean that it's not possible, but it does mean that there are a great many things to rule out before

       

      On the caffeine part of this discussion...

      RHMLucky777

      Read More

      Hope you don't mind, but I'm going to make comments on several things that have been siad, but make them all in this one comment...

       

      The odds against this being hypnic headache are staggering. That doesn't mean that it's not possible, but it does mean that there are a great many things to rule out before

       

      On the caffeine part of this discussion -- please, everyone, remember that regardless of it being in foods, not being a prescription drug, etc., it is still a very powerful drug. Please do not give medical adivce here, and that includes recommending a particular dosage of caffeine. That really needs to come from your doctor.

       

      Your sleep issues could be a huge component in whatever type of headache or Migraine you're having.

       

      On thyroid testing, a TSH test by itself doesn't tell a doctor much of anything. You need two other blood tests -- Free T3 and Free T4 to go with the TSH level to really be able to tell anything.

       

      What have I missed? LOL!

       

      Hope some of this is helpful,

      Teri

       

       

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Yes Teri, very helpful.

       

      Would that be what the docs call a "full thyroid panel"?

       

      I'm aware that no one was prescribing or encouraging me to try a stimulant without my doctors advice. 

       

      although this afternoon I thought Hypnic might be it...the more I've read the less it sounds plausible.  And, after reading how so many on here...

      RHMLucky777

      Read More

      Yes Teri, very helpful.

       

      Would that be what the docs call a "full thyroid panel"?

       

      I'm aware that no one was prescribing or encouraging me to try a stimulant without my doctors advice. 

       

      although this afternoon I thought Hypnic might be it...the more I've read the less it sounds plausible.  And, after reading how so many on here have multiple types of headaches I realize I'm fortunate to have relief with Triptans.

       

      I'm working very hard to get my sleeping situation changed and it will happen soon.  But, in the 24 yr. history of my migraines they've remained the exact same intensity and location and this is the first time in my life that I've been sleep deprived.

       

      Thank you so much for what you lobby for and if you need voices you can count on me.  Just let me know what I can do.

       

       

    • Teri Robert
      Health Guide
      Dec. 06, 2009

      Glad it helped!

       

      I'm sure the thyroid tests I mentioned are called a thyroid panel by some doctors. I'm just hesitatant to say that all doctors and labs would have the same "panel." That's why I gave you the names of the individual tests. Maybe it would help to tell you that for 10 years, I tried to convince my family doctors that I had thyroid issues....

      RHMLucky777

      Read More

      Glad it helped!

       

      I'm sure the thyroid tests I mentioned are called a thyroid panel by some doctors. I'm just hesitatant to say that all doctors and labs would have the same "panel." That's why I gave you the names of the individual tests. Maybe it would help to tell you that for 10 years, I tried to convince my family doctors that I had thyroid issues. Had all the smptoms -- hair loss, dry skin, weight issues -- had the family history. All I could get any of them to do was run the TSH test and say it was at the upper limit of "normal." Finally, my Migraine specialist ran the tests and started my on meds for hypothyroidism. My hair is coming back in, my skin is no longer so dry that it peels off, and I've been losing weight steadily with the same nutritional and exercise plan as before.

       

      You are very welcome, any time. I will be calling on people to send letters to Congress again, I just don't know when. If you register and subscribe to our newsletter and my SharePosts, you'll be sure to know when that is. Thank you so much!

       

      Teri

    • Teri Robert
      Health Guide
      Dec. 06, 2009

      I'm not sure which one you paid $32 for. Whichever it was, the pharmacy was ripping you off. NONE of the triptans has ever had a  manufacturer suggested retain price that high. I did some pricing comparisons, and here's what I found:

       

      Brand Imitrex, 100 mg, buying 9 tablets

      CVS: $261.58 for nine, making it $29.29 per tablet

      Drugstore.com: $226.78,...

      RHMLucky777

      Read More

      I'm not sure which one you paid $32 for. Whichever it was, the pharmacy was ripping you off. NONE of the triptans has ever had a  manufacturer suggested retain price that high. I did some pricing comparisons, and here's what I found:

       

      Brand Imitrex, 100 mg, buying 9 tablets

      CVS: $261.58 for nine, making it $29.29 per tablet

      Drugstore.com: $226.78, making it 25.20 per tablet

       

      Generic sumatriptan, 100 mg, buying 9 tablets

      CVS: $235.78, making it $26.14 per tablet

      Drugstore.com: $199.97, making it $22.22 per tablet

       

      Maxalt-MLT, 10 mg, buying 6 tablets:

      CVS: $161.87, making it $26.97 per tablet

      Drugstore.com: $138.75, making it $23.12 per tablet

       

      I know this is all difficult. Just thought I'd give you some figures.

       

      Also, you might want to go to www.pparx.org and see if you qualify for free or reduced cost meds.

       

      Teri

       

    • Anonymous
      Hurting in Indiana
      Dec. 07, 2009

      Thanks Terri,

       

      I WILL subscribe here.  Though last week when I swallowed my pride and told a NP at the doctors office how I can't afford the meds he gave me a few samples and told me to check back in a few weeks to see if they have more.  I bout cried I was so happy. LOL  He gave me Zomig which which even worked a bit faster than the Imitrex...

      RHMLucky777

      Read More

      Thanks Terri,

       

      I WILL subscribe here.  Though last week when I swallowed my pride and told a NP at the doctors office how I can't afford the meds he gave me a few samples and told me to check back in a few weeks to see if they have more.  I bout cried I was so happy. LOL  He gave me Zomig which which even worked a bit faster than the Imitrex 100mg.

       

      I'm on my third day of waking without a headache.  Life is good:)  I am really going to persue the thyroid testing and stick to it this time even if I have to beg and borrow to afford the testing and follow up visits necessary. 

       

      Kristy

  • Anonymous
    margaret Cooke
    Jun. 25, 2008

    3 weeks ago I had 2 Root canals done, since then I have been waking with a headache at the back of my head, I asked my Dentist if it could be the Material they put in root canals I was allergic to and he was offenede and said no. I have stopped taking sugar substitutes as they are known to cause it, and I have been searching the Wb to find out how to stop it....

    RHMLucky777

    Read More

    3 weeks ago I had 2 Root canals done, since then I have been waking with a headache at the back of my head, I asked my Dentist if it could be the Material they put in root canals I was allergic to and he was offenede and said no. I have stopped taking sugar substitutes as they are known to cause it, and I have been searching the Wb to find out how to stop it. Any advise would be welcome, if Caffeine helps how would you take it and wouldnt it stop you going to sleep.Thanks

    • cking
      Jun. 25, 2008

      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. ...

      RHMLucky777

      Read More

      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

    • Anonymous
      margaret Cooke
      Jun. 25, 2008

      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...

      RHMLucky777

      Read More

      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

    • cking
      Jun. 25, 2008

      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...

      RHMLucky777

      Read More

      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

    • Anonymous
      margaret Cooke
      Jun. 26, 2008

      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...

      RHMLucky777

      Read More

      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

    • cking
      Jun. 27, 2008

      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...

      RHMLucky777

      Read More

      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

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      You guys are great!!!

       

      I'm 46, have been treated for migraines since I was 22.  Imitrex and all the others DO help but I can't afford them very often.  $32/each because I have no health insurance.

       

      I've told doctors for years that I wake up with them a couple times a week.  Almost always around 3 or 4am.  No one has ever given...

      RHMLucky777

      Read More

      You guys are great!!!

       

      I'm 46, have been treated for migraines since I was 22.  Imitrex and all the others DO help but I can't afford them very often.  $32/each because I have no health insurance.

       

      I've told doctors for years that I wake up with them a couple times a week.  Almost always around 3 or 4am.  No one has ever given that statement much thought.  Every family doctor and Neurologist have simple said "common, classic migraine".  I sleep on my stomach, hands tucked under me with my neck hyper extended to the far right.  I've often thought this might be a trigger due to alignment or circulation or something.  I have a lot of neck soreness in the mornings but can't break this sleeping habit.

       

      I get headaches a couple times a week............ if I have the money I will buy ONE Imitrex for the current headache................it's such a great joy when I can afford to buy two at a time!!!!

       

      Yesterday morning when I woke at 3:51am in pain (always one side or the other) I wondered if it was sleep apnea or something like that. I'm single so there is no bed partner to tell me if I grind my teeth or snore.  This morning I woke at 4:05am in pain again.  I typed "waking with headache" into my search bar and found this forum.

       

      I want to talk to a doctor and make them listen to the fact I WAKE with them!!!!!!!!  But, due to kidney stones prior to a divorce I'm declined insurance "due to medical history".  I'm paying off so many medical bills that money is non-existent for doctor visits that won't get me anywhere.

       

      In the meantime if anyone has ANY advice I would appreciate it.

       

      I'm on no daily meds

      I do drink coffee

      I'm not overweight

      Thin, never exercise and don't eat the healthiest diet probably.

      Doctors have often thought I have an underlying thyroid condition but blood test come back normal

      I have an eye condition called Superior Limbic Keratoconjunctivits but no other health concerns other than the frequent migraines.  A couple years ago a doctor thought I had Hashimotos Disease but the test came back negative and I didn't really have the money for follow up visits.

       

      Sometimes I just think it's a vicious cycle.  Headache, buy a pill, worry about money, wake with headache and repeat. LOL

       

      Again, if anyone has any suggestions I sure would appreciate it.

       

      Hurting in Indiana

       

       

       

       

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      BTW... over the years (back when I had insurance) we've tried beta blockers, calsium channel blockers, ergotamines, DHE, bio feedback, accupunture, bite plates, orthotics, antidepressants, anti-anxiety drugs, hormone therapy etc.....

       

      I failed to mention that I do have a migraine everyday for four or five consecutive days every month which I figure is...

      RHMLucky777

      Read More

      BTW... over the years (back when I had insurance) we've tried beta blockers, calsium channel blockers, ergotamines, DHE, bio feedback, accupunture, bite plates, orthotics, antidepressants, anti-anxiety drugs, hormone therapy etc.....

       

      I failed to mention that I do have a migraine everyday for four or five consecutive days every month which I figure is my body still thinking it's menses time.  18 months ago I stopped having periods cold turkey.... figure menopause. (I'm now 46)

       

      If I could just afford any of the following, which have always taken the pain away, I'd be a different person.  (Maxalt, Imitrex, Zomig,)  My income level is very low and would love to get some type of prescription assistance but the online forms and phone calls get no response.

       

      I'm at my wits end.

    • cking
      Dec. 04, 2009

      Dear Hurting in Indiana:

       

      I am so sorry you are chronically experiencing the "waking" headaches, and that no good solutions have been found yet.  Also, I am sorry that your financial situation does not allow for use of triptans when you need them (like Maxalt, immitrex, etc) or for more investigation of your thyroid issues.  I DO have hashimotos...

      RHMLucky777

      Read More

      Dear Hurting in Indiana:

       

      I am so sorry you are chronically experiencing the "waking" headaches, and that no good solutions have been found yet.  Also, I am sorry that your financial situation does not allow for use of triptans when you need them (like Maxalt, immitrex, etc) or for more investigation of your thyroid issues.  I DO have hashimotos thyroiditis and my headaches had become daily events for three years before getting the thyroid condition diagnosed and treated.  I still have trouble getting "normalized" on thyroid medication because the Hashimotos is erratic, and my dose has to be changed frequently.

       

      But back to the headaches.  When you do into your physician, it might be best to be VERY ready so that you don't have to pay for many visits.  Going to a headache specialist at the START might help you get to a diagnosis faster.  There are lists on this website to find a good specialist.  Also, if you can keep a diary of your symptoms, triggers, WHEN your headaches occur, specific times of day/night, etc, and any responses to treatment that will help your physician.  Also, since many practitioners have never seen a patient with hypnic headache (only 80 patients world wide had been diagnosed in the world literature from 1977 until 2008), it would help if you could take your physician an article about it.  If you google "hypnic headache" you will be able to read many articles.  A survey by Dr. S. Evers or Everrs or Evvers is one of the best that talks about symptoms, treatments, etc.

       

      There are other things that can make you wake with headaches.  Dehydration, sleep apnea (not enough oxygyn), brain tumor, increased intra-cranial pressure, migraines, etc.  Your MD needs to sift through all your symptoms to rule these out.  Your sleep position that you described may contribute to your ability to "breathe" during the night.  The 4-5 day headache near the time you use to have menses sounds like it might be hormonal migraine, but your MD can help you with diagnosis and treatment.  If your other nocturnal headaches are hypnic, you can try either drinking 5 cups of coffee before bedtime or taking 200mg of caffiene before going to sleep.  These are less expensive forms of treatment than taking lithium or indomethicin.

       

      You mentioned that you are thin, but do not exercise.  There has been some discussion and an article that suggested that exercise improve headache status and I dont' remember if it was reducing the frequency and/or severity.  I hope you are able to get some help, because nightly awakenings with headaches can be not only irritating but downright frightening if they are extremely severe.  Good luck--please let me know what you find out if it's not too much trouble, and if you are able to get some relief.

    • cking
      Dec. 04, 2009

      PS for "Hurting in Indiana"

       

      I forgot to ask if this is your first time visiting this website/forum?  If so, you might consider checking out all the articles on this website www.mymigraineconnection.com  There is so much helpful information, discussions of treatments, lifestyle measures, alternative therapies, diagnosis tips, etc.  It is...

      RHMLucky777

      Read More

      PS for "Hurting in Indiana"

       

      I forgot to ask if this is your first time visiting this website/forum?  If so, you might consider checking out all the articles on this website www.mymigraineconnection.com  There is so much helpful information, discussions of treatments, lifestyle measures, alternative therapies, diagnosis tips, etc.  It is an oasis for those of us who have searched lifelong for treatment of headaches that do not respond well (or at all) to treatments prescribed by even the best of well-intended physicians.  I am not a moderator on this site, but there are several who also post many important letters relating to new medical articles, new research results, clinical trials (free treatment!), etc.  If you put your name and email on the registration list, you will receive notices which are VERY helpful on staying informed.  I pray you will find some relief.

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Oh my it feels good to have someone understand.  thank you very mnuch for your response.  yes, this is the first time I've been here on this site.  The first 14 yrs of my adult life I worked in a clinic of physicians as an LPN.  We tried evrything...LOL...we even dropped Lidocain into the nostril of the affected side just to give me some...

      RHMLucky777

      Read More

      Oh my it feels good to have someone understand.  thank you very mnuch for your response.  yes, this is the first time I've been here on this site.  The first 14 yrs of my adult life I worked in a clinic of physicians as an LPN.  We tried evrything...LOL...we even dropped Lidocain into the nostril of the affected side just to give me some relief.  These docs were all GP's.  In 199o or 91 I was in the clinical studies for this new "wonder drug" for Migrines.  It was a double blind study and my doctor/emloyer didn't even know if I had it or the placebo.  The first time I injected myself with the study med I cried....within five minutes the pain was gone..(tho' the neck and chest tightening was frightening that day).  I knew I had the new drug and not a placebo.  I used to get free injectables.  I no longer work in the medical field and occasionally end up at ER for relief when I have no Imitrex.  Then, I worry about how I'm going to pay off the bill. LOL 

       

      For yrs and yrs I kept food diaries and weather/activity journals but we could never find a pattern or triggers. 

       

      I'm a very high strung person who has a hard time concentrating and focusing.  I'm one of those annoying, impatient type A personalities.  I've tried Yoga and meditation after all preventitives failed. 

       

      I'm very excited to try the large amt., of caffeine tonight.  I always knew that caffeine can enhance pain meds and that it can cause withdrawl if you stop ingesting it suddenly but it never occured to me to use it in this fashion. 

       

      Sleep Apnea has occured to me as I'm familiar with it because my mother has it.  I see it's going to be kind of a double edged sword trying the increased caffeine.  When I did have insurance and went to my doctor regularly he asked me to cut back on caffeine due to fibroid laden breasts, my eye condition and kidney stones but, hey, a person with a migraine will do whatever they can to get some normalcy.  I know you are not dispensing medical advice and we are only friends discussing our problems but I have to tell you how appreciative I am for anything new I can try that doesn't cost an arm and a leg. 

       

      If the caffeine pills are cheaper than coffee I'd just as soon go that route.  How many milligrams should I be trying?

       

       

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      Ooooops, you did tell me 200mg.  I'm sorry.....oh yeah, did I mention I retain nothing!!! LOL

       

      Re: Hashimotos.  I have an order for some labs to test thyroid again but not the money.  Does it have flare ups?  This week I've had the snesation again of a thick lump in my throat which I know could be my thyroid.  So, I'd love to...

      RHMLucky777

      Read More

      Ooooops, you did tell me 200mg.  I'm sorry.....oh yeah, did I mention I retain nothing!!! LOL

       

      Re: Hashimotos.  I have an order for some labs to test thyroid again but not the money.  Does it have flare ups?  This week I've had the snesation again of a thick lump in my throat which I know could be my thyroid.  So, I'd love to ahve the test done right now but just can't.  My hair is getting really thin...

    • cking
      Dec. 04, 2009

      Hi again!  I am a bit nervous about your "trial" with caffiene if your doctor has warned you about not taking it for other reasons.  I went without it (or chocolate, cheese, etc) for 3 years trying to see it if made a difference in my migraines and it did not.  I don't know if your "waking" headaches are migraines, or hypnic headaches. ...

      RHMLucky777

      Read More

      Hi again!  I am a bit nervous about your "trial" with caffiene if your doctor has warned you about not taking it for other reasons.  I went without it (or chocolate, cheese, etc) for 3 years trying to see it if made a difference in my migraines and it did not.  I don't know if your "waking" headaches are migraines, or hypnic headaches.  It seems you do have migraines if you responded so well to the injectible imitrex years ago.  I am so sorry you don't have access to it or oral triptans now. 

       

      For my migraines, the triptans work OK so long as I am on Depakote ER preventatively.  If I take no preventative, nothing works.  I found that my hypnic headaches (waking every morning at 4:33am, and sometimes during the night at specific times) did not respond at all to triptans or any other migraine medications.  They also did not respond to hypnotics, sedatives, or low doses of narcotics.  They seem to be inflammatory headaches;  it is believed that hypnic headaches arrise from stage REM sleep.  And after reading many reports, it appears that half of the people with hypnic headaches had a LONG history of uncontrolled migraines.

       

      So, I hope and pray the caffiene does not do any damage and I wish you could discuss it with your MD before trying it.  I hope you sleep well tonight and do not wake up with a headache.  If your Mom had apnea, you might also be at higher risk.  I have a friend who uses a CPAP mask at night and he is sleeping well, no more headaches, and no more depression or day-time drowsiness.

       

      About Hashimotos, it does have flares.  It is an autoimmune condition, and during flares, my hair falls out and my neck is in pain.  My eyesight has been affected by it also, as well as bowel habits changing when the flares occur.  Even though I am on thyroid replacment (Synthroid) and I do feel much better than before the diagnosis, my antibody counts are still way off the chart.  There is a website called www.healthcheck.com where you can order your own medical tests without going through your physician.  The costs are lower than having to pay for a medical visit PLUS the tests, and they have the option of having their physician discuss your results for a small fee.  The tests come with reference charts that tell you what is "normal." 

       

      I hope you have time to check out other portions of www.mymigraineconnection.com and you might find some other info that is pertinent to your headaches.  Given your training as an LPN and having worked for a group of GPs, I think you would find the medical info interesting.  Teri Robert and Nancy Bonk present articles and news to us regarding new advances and studies, and they attend national conferences where the world headache experts report the newest studies.  They also meet with congress to lobby for healthcare reform that is more supportive of migraine sufferers.

       

      I just looked at Glaxo's website (the manufacturer of imitrex).  They do have programs for free medications for patietns who meet certain income criteria.  You can read about it at:  www.gskforyou.com   I hope you qualify.  If not, maybe one of the AARP can help?

       

      But I think you need a proper diagnosis for the "waking" headache to see if it is a migraine or a hypnic headache, or something else (apnea, etc).  If you do try the caffiene tonight, please let me know how it worked for you.  I don't know if you should do it continually since your MD warned you about too much caffiene.

    • Anonymous
      Anonymous
      Dec. 04, 2009

      cking you're the best.

       

      I was told back when Imitrex first came out that it would ONLY work on a true migraine.  Is this still the thinking?  After speaking to all of you I got a sample of Zomig from a sympathetic doctors office and it worked wonderfully as they always do when I can get them.  Unlike what I've read on here about Hypnic...

      RHMLucky777

      Read More

      cking you're the best.

       

      I was told back when Imitrex first came out that it would ONLY work on a true migraine.  Is this still the thinking?  After speaking to all of you I got a sample of Zomig from a sympathetic doctors office and it worked wonderfully as they always do when I can get them.  Unlike what I've read on here about Hypnic headaches mine last UNTIL I get a Triptan or get knocked out in ER.  But we finally have an ER doc who will just give me Imitrex instead of knocking me out with Demerol.

       

      I had an MRI in 2005, (still had insurance) to rule out MS.  In fact, they did a myriad of tests for numerous autoimmune diseases.  My symptoms were difficulty swallowing and my left eye would close involuntarily.  I was dx with SLK of the eyes which is most often found in thyroid patients.  But, like I said before, my thyroid keeps coming back fine ...hence, the one doc thinks Hashimotos and we just get the labs during a normal time.  I was suppose to get a follow up MRI to rule out MS for certain but it took me yrs to pay off the first MRI so I never returned.  I've also never returned to the doctor who thinks I might have Hashimotos.  <---all because of having no insurance.

       

      I've read all day long on this site and others.  I'm now convinced of the old addage that we need to treat the underlying issue.  Which appears to me to be thyroid.  If I could get STRAIGHT to the right doctor I could probably make payments...but it's the problem of having to start with GP to get referred. 

       

      KUDOS to Nancy and Teri.  Something has to change in this country.  I've never been a burden to my county, state or country.  I'm a productive citizen who is going to end up medically bankrupt  due to the inability to get medical care.  This is why I left nursing....I watched too many elderly people die because they couldn't afford their medicine or proper health care. 

       

      Okay, I'm off my soapbox.  I'm going to try to figure out how to see someone re: thyroid. 

       

      Again, thank you so very much.

    • cking
      Dec. 04, 2009

      It is great you found a compassionate physician today who gave you the zomig sample!  What a saint.

       

      And it's great that it worked!  I don't know the answer to your question, that if a headache responds to imitrex, it "must be a migraine," but maybe someone else reading this can answer.  I can tell you that my hypnic headaches do not respond...

      RHMLucky777

      Read More

      It is great you found a compassionate physician today who gave you the zomig sample!  What a saint.

       

      And it's great that it worked!  I don't know the answer to your question, that if a headache responds to imitrex, it "must be a migraine," but maybe someone else reading this can answer.  I can tell you that my hypnic headaches do not respond one iota to any triptans or other migraine treatments or preventatives.  Perportedly they can be somewhat prevented by chronic nightly use of lithium, indomethicin, and caffiene.  A few patients ahve responded to other meds, but not many.

       

      However, the reverse may not be true--while my migraines at one time in my life responded well to imitrex (was the first person in my county to receive it at the ER one night--what a miracle drug!), my headaches excalated to teh point where they no longer worked.  Getting thyroid treatment and taking preventatives has helped.  I don't know what to suggest about your thyroid situation, but you might check out internet websites that provide great coverage of thyroid issues.  There is a wonderful lady names Mary Shoman who directs the thyroid information channel of www.about.com  and I don't know if she is still there, but she provided lots of background on symptoms of thyroid disorders, treatments, foods to avoid, etc.  It was very helpful when I was trying to sort out what was wrong with me. 

       

      Although the literature suggests that hypnic headaches are more likely to be on both sides of the head, and that people who have them are most likely to be over 50 years old, there are exceptions.  But if you are having migraines only and no hypnic headaches, I hope you can gain access to imitrex or another triptan when you need it.  Teri suggested the generic Imitrex which is cheaper, and it also appears that some companies have programs for people who cannot afford medications. 

       

      If you have been reading the website info today, you have probably learned the consequences of undertreatment.  Migraines make us more susceptible to stroke, especially when they go on for DAYS without a break.  Also, I have been told that the hypnic headache may result from longterm brain damage from undertreatment of my hormonal migraines.  Lesions have been found in the brains of people with long-term migraine disease.

       

      Please keep writing to let us know your progress.  And I do hope you can get more sleep.  Your schedule sounds exhausting.  I admire you for doing everything you can to make ends meet and try not to be a burden on anybody.  But it is a really tough journey you are on, and I guess you know by reading this website today and seeing so many others in painful situations and many in financial binds, you are not alone.  It really bothers me that insurers will not offer coverage to people with preexisting conditions, and I hope and pray that healthcare reform makes  this cruel practice illegal.

    • Anonymous
      Hurting in Indiana
      Dec. 04, 2009

      I have let my state rep know that there are some of us that have fallen through the crack.

       

      "Undertreatment".  That was an eye opening statement cking.  I had never read about the lesions. (makes me think I should have had that second MRI on the brain)

       

      Yes, I'm a lucky one who knows there is relief 99.9% of the time from the triptans. ...

      RHMLucky777

      Read More

      I have let my state rep know that there are some of us that have fallen through the crack.

       

      "Undertreatment".  That was an eye opening statement cking.  I had never read about the lesions. (makes me think I should have had that second MRI on the brain)

       

      Yes, I'm a lucky one who knows there is relief 99.9% of the time from the triptans.  And when I win the lottery my issues will be resolved. LOL

       

      Good Night and god Bless you all.

  • Nancy Harris Bonk
    Oct. 26, 2007
    to hear you are having success with this specialist. Please keep us posted. Big Smile
    • cking
      Oct. 26, 2007

      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