Headache advice needed!!

[trev0024]

I had retrosigmoid surgery to partially remove a facial schwannoma March 2012. I've been suffering from daily headaches ever since. I never was a headache person prior to my surgery. I have already met with my neurosurgeon, primary doc, headache specialist neurologist and physical therapy. What works best and most reliably is actually Tylenol. The best prescription drug I've used is protryptoline. I've also used nortryptoline, gabapentin and indomethacin. My headaches are always worst after I sleep at night, sometimes waking me up. At times they have been 9/10 in brought me to tears (no joke). Physical therapy was mostly craniosacral and soft tissues mobilization.

What do you know about rebound headaches with Tylenol?

What is the correlation to night time headaches or morning after sleep?

Anyone heard of gluten allergy after surgery? I have co-workers that swear by this and I tend to think they're crazy.

I really just need to hear some success story or something. These headaches are a real silent killer for me.

Thanks for any help?

[Captain Deb]

I suffered for 5 years with awful headaches and tried so many meds, I can't even remember them all. My first turning point was an occipital nerve block, and a year later I started Botox injections.  I had them every 3 months for 2 years.  I stopped just to see what would happen, and lo and behold, migraine frequency was down to one every 2 months or so, which I took care of with injectable Imitrex. 
About OTCs (over the counter)  Acetomenaphine (Tylenol is very damaging to the liver over the long term and NSAIDS (ibuprophen, Advil) will really mess up your stomach--I still have GI problems from all the Advil I took 10 years ago.  Both will give you rebound headaches.

I am a real advocate of injections over meds for headaches, mainly because that's what worked for me.  Esp. Botox because of all the studies done on it, it seems to be a very safe solution for a lot of us.  Just have to make sure you have it done by someone trained in Botox injections.  No less than 3 syringes full administered in about 16-20 different points around forehead, incision area and occipital area.  It is a little painful, but NOTHING compared to a major brainwreck!

Capt Deb

[ritasewell]

My husband has suffers daily. In bed 24/7. Have tried all preventative meds, surgery to clip occipital nerve and botox. Nothing has helped. We aren't sure where to go next.

[staypoz]

Different things work for different people and finding what works can be a matter of trial and error.  I had a neurostimulator implant nearly three years ago.  It's essentially a pacemaker for pain.  It doesn't work for everyone, but it has made a huge difference for me.  St. Jude Medical and Medtronic are two of the manufacturers of these devices.  You might want to talk to your doctor to see if this is an option for you. 

staypoz

[Syl]

Tylenol gave me rebound headaches real bad. I was taking Tylenol 3 times daily. I finally went to a neurologist who put me on Pamelor & helped get me off Tylenol. After that treatment, my headaches were mostly in the morning, although still chronic. They would make me cry sometimes, but they were often debilitating.

For me, applying heat to the neck helps a great deal, often keeping me from having to take any Tylenol. I still keep Tylenol handy to be used only as a last resort. I prefer to use aspirin if I have to take something.

I walk for exercise, but find that if I slack, I get headaches more often. I think walking helps relieve the tension in my shoulders.

I don't know if I still fall in the category of chronic headache sufferer, but I still get headaches more often than I used to before my surgery. I can go 3 weeks or almost a month without one of those morning headaches. Then at times I might get them 2 or 3 mornings in a row. 

Syl

[wvDan]

I have had nerve block injections at the back of my head, my chin and above my eye. These have improved my headaches a great deal. For those of you who have had Botox, where do they inject it?

[wintersmd]

I get 1-2 headaches per week since my surgery.  I was never a headache person until lately.  I had some pain meds left over from the surgery and they helped.  Went to the doc and he put me on muscle relaxer.  Seems to help me quite a bit.  Still get them weekly, but now I get through them with no problem.