Headache Update

[Janet]

Hi all,

I thought I would update you on getting my headaches under control as I haven't posted for a while. I finished a year of the Botox study and found that Botox really helped with the number and intensity of my headaches. I was able to totally stop my Trileptol (like Neurontin) and cut my Indomethacin back from 3 to 2 a day. I went from taking Maxalt around 2 times a week to about once every 2 months.

The Botox has worn off since the study was finished about 3 months ago. I am taking Maxalt about 1-2 times a week and take Indomethacin 2-3 times a day. I have to watch my activity more so I don't trigger a headache. (Caused by different movements) My headaches are not as bad as before the Botox but have increased since most of it has worn off.

The good news for me is that my insurance will cover 2 rounds of injections. That will take me into October. If it proves to be beneficial (I already know that it is) they will continue to cover it.

Your probably wondering if it helps with your looks (wrinkles). Not really. The injections are mostly in your head, neck and shoulders, although you do get some in your forehead.

I asked my headache neurologist if you could give steriod injections and botox at the same time. I really want to stop take Indomethacin and figure the anti-inflammatory properties of steroids and Indomethacin might work in the same way. Anyone every try the combination?

I can't make it to the conference in July. Wish I could be there and meet some of you but I have something else going on.

The journey continues,

Janet

[staypoz]

Hi, Janet.  Good to hear that you got some relief from the Botox.  I think there is a limit on the number of steroid injections you can get because it can degrade the skin, so I'm not sure those inejctions are a long- or even medium-term solution.   

staypoz

[Janet]

Thanks Staypoz. How are you doing lately with your headaches? I feel that someday I am going to be told to stop the Indomethacin and I am hoping for a back-up plan. I've been told that people with rheumatoid arthritis stay on Indomethacin for long periods without problems. Still hoping for nerve burn-out!

Janet

[staypoz]

Oh, the headaches are still there and I decided against pursuing nerve entrapment surgery.  I got three other opinions and two of the three docs I talked to recommended waiting to see if things got any better for me. 

I know what you mean about a back-up plan.  Because of another medical condition, I have to be careful of some drugs and NSAIDs are among them.  Motrin and I are inseparable and even though I take a very low dose, I got a warning just last week from my doctor.   We just have to keep experimenting and pushing the doctors to do more research on this darned side-effect!   

Sorry you won't be able to make it to the symposium!!

staypoz
 

[neal r. lyons]

hi janet glad to hear that you've been able to fine some relief for your headaches and wish you well in finding something that you'll be able to stick with
       i'm scheduled for an surgery on june 1 but am still uncertain if i'm going to stick with the plan-sub-occipital(i have a lg (mid-size tumor) and am in the process of trying to determine if translab approach could be the better due to fewer incidence of post surgery headaches  i have read that the headaches are often more severe with smaller tumors  your thoughts?   what is nerve burn out?  bye for now-neal

[Janet]

Hi Neal,

I had a lot of migranes and dull headaches before surgery. My doctor did tell me that the people with headaches prior to surgery have a higher incidence of headaches after. Mine got worse. My headaches are on the opposite side of my surgery.

I've read a lot about the therories and surgical techniques suspected. I have my operating room report and all the precautions were taken. The most experienced of surgeons seem to have a percentage of post-op headaches from what I've picked up from this site and from my own experience. I've also noticed from this site, that different surgical approaches give different variations of headaches. Some of these variations seem harder to treat than others. (Totally non-scientific observation by me.) Research, like you said, suggests R/S has a higher percentage. All in all, it is a bit of a crap shoot even when you work the odds.  Even non-AN people can get these type of chronic headaches from trauma, high fever or out of the blue. 

In answer to your questions. Regarding the smaller tumors? I read the same. Never heard an explaination as to why.  Burn out was brought up by one of our posters.  Her neurologist said sometimes the nerve just stops firing pain signals.

The upside is that I have the same hearing (75%) as before my surgery and no facial weakness.  Life is good even though a little different.  With headache treatment, fairly close to normal with a little work.

Best wishes with your decision and your up-coming surgery. Thanks for your well wishes.

Janet