Post-Treatment > Headaches

Headache Update

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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

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