Post Operative Headaches

[bjordanr]

I am looking for others who have experienced post surgical (acoustic neuroma) headaches that are disabling. Mine are severe tension like and site of incision type headaches. I have them always, but some days are more severe than others - to the point that I cannot function.  (FYI: I also have right side deafness, right side muscle spasms, facial paralysis, cognitive speech disorder & some short term memory loss)
Would like to hear from others who have this problem and what have they done for it. I am currently taking Neurontin, Vicoprofen and Zanaflex. I have tried physical therapy, Elaval and corizone injections without success and am currently trying botox injections (into my neck, head and shoulder). Thanks.

[Janet]

Sorry about your headaches. I can relate. It is quite the challenge isn't it?

I take Trileptal 300mg at bedtime.(Neurontin made me hyper and I had trouble sleeping.) I'm not sure how much this helps but I am continuing to take it.

The medication that makes a difference is Indomethacin. It helps with the back of the head and neck pain. It is an anti-inflamatory and makes my headaches managable. I started with 75mg at bedtime and 25mg up to three times a day as needed. That was a total of 150mg per day. I have been able to reduce it to 25mg three times a day. (Every 8 hours.) I do not take the 75mg at night. In other words, I take a total of 75mg per day. Google search hemicrania continua. It describes the type of headaches I have (on one side of the head) and suggests the Indomethacin is found to be the most helpful medication.

For migrane type headaches (1-2 times a week) I take Maxalt mlt 10mg and they go away with in 20 minutes. These are expensive so they only dispense 9 at a time. I use them sparingly even though my insurance covers it.

Physical therapy helped also. If I hold my head straighter, I seem to get less neck pain.

I am interested if your Botox is helpful. Could you let us know how it works for you? I would love to not take so much medication.

Thanks, Janet

[mlwitte]

I just got out of the Stanford on 7/25 - 6 days longer than plan for surgery for AN. We encountered a spinal fluid leak perhaps around my middle ear - caused by a thinning of the dura layer by the middle ear. Massive head aches as a result. Nothing even took the edge off for hours and hours. Followed by 2 spinal taps to relieve pressure and promote healing. Doc's tell me they had not encountered such a problem before.

A couple of things came out of this - one I was immensely dehydrated and drank plenty of water and gatoraide to replentish my elctrolytes (6 liters in 8 hours). Once the Doc's signed off on it a week later, I was able to start taking vitamins - needed that as well. That has helped relieve the head aches. I have not been sleeping much - averaging about 2 hour before waking up and getting back to sleep. Walking 2 or 3 times a day - for 15 to 20 minutes has made a difference.

I also think that when you are in surgery for 6 hours or more, drugged and Doctors as nice as they are are moving and twisting your head around - your neck and back are going to get our of alignment - needing either massage or chiropractic therapy. Unfortuneately, I can't drive yet but can't wait to to get both.

Lastly, ice packs - 10 to 15 minutes at a time. Longs or Rite Aid sell some nice packs that can be refrozen quickly and used over and over again. When my headaches were the worse - this was the only thing that let me get some sleep.

The longer you take the meds the the more you depend on them for pain - which I understand - but the tougher it is for your body to rebound on it's own. I know I could not do anything at the time but now I have been home for 3 weeks - having two surgeries in 5 days - and I feel so much better than a week ago.

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