Tackling Headaches head on...

(indented text by patients)

Various drugs may do the job

Up until I had my AN surgery (in '92) I was never sick. Since the AN surgery I have been to several different doctors, to complain about the stiffness I get in my neck. I finally found a good one, a rheumatologist who said my problem was definitely related to the surgery.  He prescribed Flexoril 40 MG each night. That works but I have to take it everyday for the rest of my life.

The headaches persisted...  However, as a result of a back injury, I was perscribed Sodium Diclofenac.  As if by magic the headaches disappeared!

My surgery was 2/28/94. Within 1 week after coming off the decadron (steroids), I had my 1st headache... I was diagnosed with migraines (the spontaneous headaches) and exertional headaches (the jarring ones). Indocin was prescribed for the exertional headaches and was very successful.

My headaches start about 1 in the morning, sometimes later. The pain wakes me up out of a sound sleep. If they are that bad usually 3 Aleve dose the trick. Aleve is the same as naprosyn and is 220mg each pill.  The bottle of Aleve says no more than 2 pills a day I believe, so best check with your Dr. and see if taking higher doses of Aleve on a daily basis would work for you.

I do have headaches, but VIOXX 50mg every morning takes care of them.  It's an arthritis med. but has taken care of my headache problem.  

I have heard many people making great claims about Feverfew, an over the counter medication that is located where the vitamins are.  Might be worth a shot. You have to stick with it a week or two to let it build up in your system.

Often, a combination of drugs is needed

I had surgery [10 years ago] & the headaches started almost immediately. I was referred to a headache specialist who has had me taking mountains of drugs to try to prevent them; they did not help. I could not make plans because I never knew when one of these excruciating demons would strike. Finally, about three years ago, she started me on Neurontin. It was the magic bullet. Nothing has controlled my headaches the way it does. However, she also has me on an antidepressant & a calcium channel blocker & Vioxx as needed.  It'a a matter of finding the right combination that works for you. 

I've tried many combinations of medication since. I've also had a course of hypno-therapy. I've been reasonably well stabilized for the past 12 months or so on 75mg Sodium Diclofenac controlled release twice per day plus a maximum dose of soluble Codeine/Paracetamol every day but I'm in real trouble if I let up on the medication.

I still have headaches and it's been 5 years.  I take 500 mg of Naprosyn 2 x day with either a zantac or cytotec or pepcid for the tummy and a very low dose of a tri-cyclic anti-depressant (amitriptiline, protriptiline, nortriptiline) at bedtime and I am pretty much headache free with those doses on a daily basis. Naprosyn is by prescription only as are the others. The naprosyn doesn't work as well without the tri-cyclics, and the tri-cyclics don't work as well without the Naprosyn.  The tri-cyclics keep me from waking up at 3am from the head pain, and the more restful sleep helps with the daily headaches.  I found this information after 2 years of chronic headaches, and after 3 days of this treatment, the headache was gone. If I stop the medications, it takes about 2 days and the headaches return, so for me it has to be in my system all the time to be headache free.

I have facial pain after surgery as well as the migraines.  Neurontin and Pamelor in combination and divided to equal amounts round the clock have worked for minimizing the migraines.

But watch out for side effects of headache drugs

My Mum has been suffering severe post operative head pain for about 18 months. She visited the pain clinic again yesterday. They prescribed a drug called Neurontin which she took immediately. She was not told of any side affects and simply told to try it and 'keep her fingers crossed'. Later in the day she got the worst attack ever which lasted for 2 hours. Her arms had gone into spasms and she was delirious with pain. My father, who has been an absolute rock throughout her ordeal had to get out after 45 mins because he could not bear to see her in so much distress.

The problem may be in your jaws 

Right around the time of my diagnosis, I noticed that I was having headaches. I tried varying my caffeine intake, and this had no effect. I noticed that I was clenching my jaw a lot, so I started concentrating on relaxing my jaw and the headaches eased. It took a great deal of effort to pay attention to the clenching and not do it, but after a while I got out of the habit. When I first started making this effort to relax, I would spend a lot of time with my mouth hanging open slightly. I felt silly, but it was the only way I could be sure I was relaxing. I still have to occasionally make this conscious effort to relax four months later.

This is called bruxism, and many people have it, though it does seem to strike ANers more often. My theory is that ANs involve several cranial nerves and that they are all interconnected, so it leads to this involuntary clenching.

Drinking plenty of water sometimes does the trick  

I had a CSF leak a couple of weeks post-op, at the site of the incision. A spinal drain was put in for a few days, relieving the pressure and allowing the meninges to heal. For those few days, and a couple more, I had the worst headaches since my surgery. The problem was simply a lack of sufficient fluid in my system (particularly around the brain). I found that increasing the amount of water I drink solved the problem. And ever since, any headache I have had has been relieved by drinking water (usually 12 to 16 oz will do it). It's been over a year since that spinal drain, and a full year since I've taken even a regular Tylenol. Those grade school health classes were right on: 8 glasses a day for good health!

I had terrible headaches for years prior to the diagnosis.  I would be so sick that I wished to drill a hole and empty what hurted so much. I found that drinking twice the amount of water per day that I am used to keeps the headaches manageable.

Instead of injesting it, rub it in ...

I had a tumor 5cm removed 2/13/96. I have had a constant headache since 4/6/96 without any relief, I have had many MRI's but nothing was found to cause the headaches... My internist felt that the nerve endings after the surgery had healed in such a way that pain signals were being sent to the brain. I felt that I would just have to live with this constant dull pain for the rest of my life. My wife heard a commercial on the radio about a product that would give relief of pain from arthritis. The main ingredient of this product is Capsaicin, derived from the common hot pepper. This substance prevents the signal from the nerve endings to the pathway to the brain. I have used this substance four times a day on my temple and scalpe where I felt pain, and I have finally found something to end my headaches! This product is called Zostrix and is sold at any pharmacy, grocery store, or discount store.

... Or sleep on it!   

I had a small, 8mm AN removed by the retrosigmoid procedure in October'98...  I developed head aches after a month and got relief through massage of my neck muscles. I am 58 and a mason and back working since March'99. I lift heavy items at work and on days when I did a lot of bending and lifting, my head aches came back. Last month it was starting to worry me as I would wake up after about three hours of sleep and have to take some ibuprofen which would give me some relief. Anyway to get to the point: My wife said I should try a firmer pillow, since I was using a soft feather one. She brought one home a week ago and I haven't had any head aches since. I hope this might help some of you.

You may want to see an AN headache specialist

There is one at Yale University that can perform miracles - here is a patient's story.

Vijayan-N, University of California Headache Clinic, Sacramento, CA 95819, USA, has published research specifically on AN headaches.

... Or a special therapist

For anyone out there experiences post-treatment headaches, cranio-sacral release treatment worked wonders for me... Look for someone trained in all phases of the cranio sacral release treatment, don't pick one who has only had one or two courses in it.

Here's the scoop on cranio-sacral therapy for headaches: http://www.upledger.com/therben.htm

Cranio-sacral therapy might be beneficial in the management of the headaches... I have personal experience with it, as a massage therapist. If you would like more information, please contact me... I am interested in offering treatments to other AN patients. Felix Moreau, Albuquerque <kiddflux AT hotmail.com>

I have been using massage therapy for several weeks now for headache/neck pain/muscle tension. It really helps...especially if done in late afternoon or evening when I can come back home and use heat packs and be done for the day.

Are your muscles tense?

I had my 1st surgery in January of 1996 and afterwards had horrible headaches, I found out that when the did the surgery, they had to cut a muscle in my neck and when it was healing it would tighten up and cause me to get these terrible headaches, my pain was relieved with a very low dose muscle relaxer...

There is more to smelling than meets the nose

Aromatherapy significantly helped a friend of mine who had severe headaches after an AN resection done in February, '97.  Here is her aromatherapy advice.

A chiropractor may be just the ticket

My surgery was 2/28/94. Within 1 week after coming off the decadron (steroids), I had my 1st headache... The migraines have been the tough nut to crack...  By last Fall they were still coming once a week, usually lasting 3-6 hours.  I met someone who is a chiropractor and figured, like chicken soup, it couldn't hurt -- although I didn't think much of chiropractors. I started going 3x week. He talked in terms of breaking the cycle. After 2 months, we went to 2x/week. After about 2.5 months, I went more than 7 days without a headache. In February, I went 17 days without one. We then went to 1 visit/week and the headaches became more frequent. We went back to 2x/week. And I now on my 9th day without a headache.

My hunch is that the occipital approach is so disruptive to the structure in the neck that there is pressure on nerves which periodically trigger the migraines. Perhaps the surgeons should consider physical therapy for the neck and shoulders right after surgery. Anyway, if you have not found relief elsewhere, give a chiropractor a chance.

How about relaxing exercises?

I have had some headaches originating in my neck and the back of my head, which seem to be from tension in the muscles in my neck and under my scalp. These often are related to physical activity, especially sudden motions, such as jumping and falling while ice skating.  My vestibular therapist has me working on relaxing my neck and shoulder muscles and letting my head move around more -- I tend to keep my neck very stiff.  The therapist says I am too dependent on visual input and need to allow my vestibular system to adapt more. The headaches diminished greatly as soon as I started consciously relaxing my neck and shoulders and letting my head bob around whenever I could. 

I used to have too much pain after surgery, 2.2 cm AN, but I got some of the solution with Chinese exercises for relaxation, like Qi Gong and Tai Chi.

Watch out for bone dust!

Recently, it has been discovered that free circulation of bone dust into the posterior fossa during intradural drilling of the internal auditory canal may be the most important factor in the development of headache after this surgical procedure.  See more here.

Ask for cranioplasty ahead of time.

If you choose the retrosigmoid approach, ask about cranioplasty. This is a procedure to cover the hole left in the scull behind the ear. There is evidence of reduced incidence of headaches when this is done. 

Last Edited: Monday, November 17, 2003