Nocturnal headaches

[maarten]

I had the sub-occipital surgery about 6 months ago. I know that with this approach, some people get frequent and severe headaches, whilst others don't.

I notice that even though I can feel fine during the day, I tend to wake up almost every night, from a strong headache. Funny enough, this happens always between 05:00-06:00AM. Has anyone experienced something similar? I find it amazing how the timing of my sleep disturbance is so consistent.

Maarten

[Omaschwannoma]

Hi Maarten,

I am in the same boat as you regarding surgery and the approach, but I am 2 + years post surgery.  I suffered with headaches and did find that in the night I would awaken with a headache.  I also began to notice my head pain was positional, i.e. depending on which side I would lay on my headache developed on that side, even headache would appear on the back of my head while reclining.  I still have headaches, on and off, and use ibuprofen as needed (I am not recommending this though).  I also have noticed I have similar symptoms that appear before the pain similar to migraines; i.e. pain in eyes, flashing lights, spots, rings that appear when my eyes are closed sometimes, stomach pain, blurring of vision sometimes, fullness (swelling sensation) to the back of my skull, etc.  I am hoping these go away completely over time as they once were daily 24/7 right out of surgery.  I hope you find relief sooner than I and perhaps an answer as to why nocturnal only?!  I have read migraines can start in the evening/sleeping hours at the same time too.  Maybe start a journal of what sensations you notice during the day and maybe you willl begin to see a pattern and can take something before you go to sleep to combat the inflammation so it doesn't wake you in pain?

[maarten]

I experience headaches depending on my position, too. Interesting phenomenon.

[Omaschwannoma]

I noticed also if my head is looking down while walking or too much of that position while in the garden working I will end up with headache.  So I am conscious of the position of my head.  Oddly enough I can bend forward while in my practice of yoga, but anytime I bring my chin to my chest, stretching out the back of the neck, for a period of time, the headache can appear.  I'm beginning to think it's not an issue of blood rushing to the head, as in forward bending or headstands as much as it is forward flexion of the neck....hmmmmm? The mystery continues. 

[terracotta]

I can say this was a huge problem for me for along time prior to taking Cymbalta. Hope you can get this managed.
Terracotta

[Omaschwannoma]

Terracotta,

What is Cymbalta specifically used for?

[Captain Deb]

Cymbalta is an antidepressant that also acts on nerve pain is how my doc 'splains it. I've been on it for 2 years and have gone off of it twice , each time ending up with a pretty severe migraine, so now I think I'll just stay on it. I spent the first year post-op avoiding any kind of heavy meds in favor of PT, Massage, acupuncture and the like. I finally gave in to the pharmacuetical industry.

Nocturnal headaches are a classic symptom of cluster headaches. There is a great website and forum at http://www.clusterheadaches.com I learned about injectable Imitrex there, and lots more stuff, like finding a headache specialist at a headache clinic who knows his stuff.

Be well everyone,
Capt Deb

[Janet]

I noticed my headaches were positional and I would wake up in the middle of the night with head pain in the back of my head. The triggering position seemed to be with my chin down while awake or asleep. I could control the position during the day but night was a problem.  I started using a soft neck brace at night to keep my chin from going towards my chest. (Make sure the cut out part is on the top.) It really helps. I also sleep with my head elevated with an extra pillow. If I jump out of bed too quickly, I'll get severe sharp pains in the back of my head. If I take an anti-inflammatory (with milk) 1/2 hour before getting up, I can avoid getting a headache. During that 1/2 hour I frequetly use a heating pad behind my head, neck and shoulders.  With a little effort, I am good to go! 

Like others, I was passive the first year and kept waiting for my headaches to go away. The second year, I realized that I had to make it happen and started treatment with a headache specialist.  I live an active life but still have to avoid bending over too much, heavy lifting and certain physical activity.

Hope you find some relief soon,
Janet

[maarten]

Question: how do you get in contact with a headache specialist? Does your PCP refer you, or your neurologist? I would like to see one however have no clue who/how to do so.
Thanks in advance!
Maarten

[Omaschwannoma]

Wow Maarten, I was having the same thought.  I'm not sure, but I probably would start with GP first or if you are in contact with your ENT perhaps call them. 

[Janet]

Check with your insurance to see what they require to see a specialist. The process varies depending on the type of plan. I don't need a referral, so I just called and made an appointment. Headache neurologists can be found at headache clinics. They are usually associated with a large medical center or university associated medical center. Post-AN headaches are complicated and can be a challenge to treat. This is reason enough to see a specialist. If you need a referral and you find some resistance, be firm and do whatever it takes. 

Janet

[jerseygirl]

Maarten,

 I had exactly the same thing happening to me for years. My headaches dissapeared in 10 years but during those "headachy" years I got up in the morning at 5 or 5:30 to avoid the headache! It works. Also, I figured out that every time I slept more than 7.5 hours, I would automatically get a headache upon awakening. So, I always woke up with an alarm clock to help me avoid the headache. Position was also important. I never slept on the back or on my operated (right) side, because it always triggered a headache. In short, during those 10 years, I never slept more than 7.5 hours per night, always got up early, even on weekends and never slept on my back. I could start sleeping on my operated side (right) two years after the surgery.

I find it luxurious now to oversleep on weekends because i do not get headaches anymore. I wonder if that is going to change after my next surgery scheduled for June.

       Eve

[ceeceek]

PS..make sure you follow up with an MRI to be certain there is nothing else creating said headache....acupuncture can be a great relief for this type of pain...and the referred website about cluster headaches is indeed a great resource....
try repositioning your pillow, or a different type also may give some relief...keep us posted on the outcome and good luck
Ceeceek

[Captain Deb]

My neurologist referred me to my headache clinic and even set up the appointment for me--cleared it with my insurance co, too. I had stumped him for 3 years so he was really accomodating about the referral.

Capt Deb

[Windsong]

I dunno... hope all med people and ins types too see this news item and act accordingly to make sure migraine type headaches are treated lol..... gee is this true?

http://news.sympatico.msn.ctv.ca/TopStories/ContentPosting.aspx?feedname=CTV-TOPSTORIES_V2&showbyline=True&newsitemid=CTVNews%2f20070430%2fmigraines_damage_070430

Windsong