Debilitating but fleeting headaches

[jpadula]

Looking for any answers or help...I've been reading a lot of entries about headaches post-surgery. Don't know if what my husband is experiencing is the same or different:  he will get these VERY sudden onset headaches that bring him almost to his knees. Last night, he was crying in pain- tears streaming down his face begging me to help him! (I've only seen him cry 3 times in over 9 years!) He was in so much pain I was afraid he was having an aneurysm or something!! He was so scared he actually said "If anything happens to me, promise you'll take care of the kids."

I was close to taking him to the ER. This was the worst one yet. It lasted about 20 minutes but then subsided (which is typical, although again, this was the worst one to date). He said it felt as if someone had hit him in the head with a sledgehammer- on the left side, which is the site of his surgery. His neck on that side also gets very stiff and painful. He gets stabbing pain around his eyes and cheekbones.

He had his AN removed 6 1/2 months ago, and he is only 38. We went to one of the best surgeons in the country, at Johns Hopkins and were very pleased with his treatment, etc. Recovery immediately after the surgery was much harder than we expected, but we also have 2 kids under the age of 5, so this made it even more exhausting. But physical therapy did wonders-very quickly too- and he returned to work after just 3 months. We called the doctor 2 weeks ago and again today, who assures us that this is typical.

But is it really typical? To have headaches this severe? Any input will be much appreciated!

[Brendalu]

Just to be on the safe side I would get your husband to the doctor.  Lots of us have debilitating headaches and there is help for them.  Mine started out very similar to your husbands.  Keep track of what he is doing and what is going on when the headaches hit.  Make notes of days and times.  I would take him to the ER if one happens again before he can get into see the doctor.  Keep us posted.  We care.  I'll keep you both in my prayers.
Brendalu

[tony]

Yes I go with the "get it it checked out"
and yes I see why your worried
The sudden onset type can be associated with blood flow
- ie a restriction somewhere in the neck or spine of the main blood flow
There maybe a clue here - where it comes on in minutes
This can be stress or muscular but there are other reasons too
If they opt for an MRI to check the AN-site maybe worth to request
the full spinal MRI - more time but it will eliminate some of the doubts
Meanwhile, a mild asprin dose (one a day - no more)
may help a bit with the flow - until the cause is found
(no more - surgery and asprin dont mix)
There is one other explanation - see if there is a certain position
sitting/lying getting up/ sitting down - where it happens
If there is a predicatable pattern - then a bone or muscle
has popped out and is blocking a key vein somewhere
- it could be 6" from the head and still cause a mega headache
- show this repeat cause to the doc - he`d work it out
Good luck
- and ease off on the heavy lifting/exercise
till you know the cause ?
Best Regards
Tony

[Soundy]

I was close to taking him to the ER. This was the worst one yet. It lasted about 20 minutes but then subsided (which is typical, although again, this was the worst one to date). He said it felt as if someone had hit him in the head with a sledgehammer- on the left side, which is the site of his surgery. His neck on that side also gets very stiff and painful. He gets stabbing pain around his eyes and cheekbones.

The highlight part of your statement jumped out at me ... I have headaches that can put me in bed til
they subside... after watching when I get them and what had just happened I have learned I have
headaches from tightened muscles and also some from some things going on in my head... I can get
startled and you know how you instantly tense up?... well if my neck muscles tighten my head begins to
ache... if I get fast dissolving Tylenol in me it can be gone with in 20 -30 minutes... other headaches are
from  change in  flow of spinal fluid...

if I lay to flat I get a head ache... and these ones Tylenol won't touch and end up reaching for stronger meds...
the doctor says he thinks that when I lay flat I am getting excess fluid around site of surgery... if I come off my
mound of pillows I sleep on at night you can actually feel a puffy spot behind my ear where there is no bone ...It
may be fluid or blood and I get to go for another MRI to check it out... doctor is hoping it is fluid... my 8 week
MRI showed some fluid that they said would reabsorb... if it is still there that is the culprit

If he keeps having alot of headaches have him thoroughly checked out ... it could be muscles tightening or any
number of things... better safe than sorry

[jerseygirl]

Jpadula,

Your husband probably has trigeminal neuralgia. It is a very rare side effect of AN surgery ( both micro and radio). The best description I have ever read is at http://www.skullbaseinstitute.com/. Look under "Trigeminal Neuralgia" to see if the symptoms correspond. This has to be reported to a surgeon, may be it will resolve. Best of luck to you and your husband!

                Eve

[marjoryb]

     I had my surgery on 7/7/06 at The Johns Hopkins University  ,but didn't start getting severe headaches until about 6 mpnths later im late November or early December.   I went to a couple doctors who tried different medications to rid me of the headaches (no combination worked) .   The headaches were debilitating .   There was nothing I could do while I had the headaches . I took medicine at the onset of a headache - spent about and hour pacing the floor waiting for the medicine to take effect.   I went back to my neurosurgeon  in tears and he suggested I go to Dr. Jason Rosenberg at the Johns Hopkins Bayview Center (to the Headache Clinic).  I spent about 45 minutes with the doctor and went through everything.   He prescribed 9i00 grams of gabapentin Plus one Indomethicin two times a day.  It works - I haven't had a headache in over a month.   I sleep at night now and I can put in five days of work every week .   I feel sleepy and dopey but I was in so much headache pain,  I'll take anything.   

marjoryb

[Janet]

Hi Marjoryb,

I take Indomethacin too. It has helped control the head pain like nothing else.  I was wondering how many mg of Indomethacin you take. I used to take 25mg but that dose does not seem to be available anymore. I take 50mg twice a day now which does work better but I was trying to keep it to a minimum. Like you, I would try almost anything to get rid of these unusual head pains.

Janet

[itsjustdeb]

I had AN surgery in March of 2000. I continue to have severe, but short lived headaches when I get over-stressed, over-excited, I laugh too hard, I sneeze too hard, I bend over too often, etc. These headaches occur at the site of my surgery and feel like the brain freeze you get when you eat ice cream too fast. I have learned to deal with the headaches and to avoid things that cause these headaches.

[Captain Deb]

I was in the exact same place as your hubby at 6 months and went to the ER at least  4-5 times that I can remember when I could not stand the pain any more. An ice pack on the neck helped me. Also finding a doc who specialized in headaches. My surgeon was across the country at House in Cali and couldn't realy help me and my local neurologist  was really no help at all. After 3 years I finally found a headache neurologist about 3 hrs away in a major city (we're in the boonies, Boone, NC to be exact!) The surgeons arent really that skilled at after-care, they just take the durned things OUT!

I hope your hubby doesn't have to wait 3 years like I did to find really a really good headache specialist.  Start trying to find one now, at a headache or pain clinic.

Best of Luck

Capt Deb

[Captain Deb]

As an after thought to my previous post, at the ER they gave me  two very good IV (intravenous) meds--toradol and compazine. They both knock out  headache like the one jpadulas husband's experienced within 15 minutes or so. Familiarize yourself with a good GP who can do this during office hours or an Urgent Care center that is open late maybe?No one needs to go through that kind of pain, and no one need to scare their family half to death either.

Capt Deb