Botox

[kzanana]

This is for those of you that have tried Botox for your headaches. How soon did you feel a difference and what changed ?? I had my first treatment on 3/3/11 and the Doc said it would be anywhere from 7-14 days before it would start to work. What did it help, if it did ? Does the feeling of hot needles flying out of the top pf your head go away ? Pressure pain in the back of the head, incision area?  I just want to know what to expect and PRAY this helps.
    He put the botox in several places on the forehead, side of forehead, both sides of my neck and the middle of my neck.
 I have severe head pain 24/7 so I am keeping my fingers and everything else crossed that this will be my Miracle Drug. 

[bell]

Kzanana:
  As with many people on this site, I have had Botox for 1 year and 12 injections each time. For me it took about 5-7 days to take effect and it starts to wear off slowly around 2 to 2 1/2 months. By the 3rd month I am ready for the 3 month checkup to have Botox again. I am almost 2 1/2  years  post op. The needle sensation does wear off and it is worth the pain to have Botox to relieve headaches. Botox does work best in succession. Good luck and I hope this works for you. 
Bell

[kzanana]

Thanks Bell, I too am 2 1/2 years post op. I can tell I have less pain when I strain but still had a killer headache a few days ago and all the pressure pain in the back on my head, incision and hole into my skull area  is there 24/7. What I can tell that it is helping is a cough or sneeze. That pain seems to go away a lot sooner. I will continue and hope it helps more and more. Kathy

[bell]

Hi Kathy:
I hope you get relief from Botox it has helped me a great deal. Are you taking any other medications?
My head throbs whenever I sneeze or cough. I have learned to sneeze from the throat and into my arm or hand, it helps my head not throb. It actually makes the sneeze louder and I don't hold my mouth shut. That is gross but I do cover the sneeze.  Good luck,
Bell 

[kzanana]

I have tried many meds but nothing h as worked so far, no difference what so ever. Are you taking something other than the Botox shots?

[bell]

Hi Kathy:
I also tried many drugs and there never seemed to be a difference outside of weight gain, dryness of the mouth, fatigue, and a few other side effects. I have opted out of all drugs so I can feel somewhat normal. My Neurologist says Depakote is the best drug that works with Botox for headaches. I really find no difference so I stopped taking that too.  Since my headaches occur every 3-5 days with Botox I take 1 Alleve about every 3-5 nights for headache, it usually subsides within an hour.  I also sometimes take Immitrex instead of Alleve. I am trying Maxlta instead of Immitrex to see if I get any different results. I am hoping this method is a little easier on my body instead of all of the drugs.
The drugs really get my stomach so I always have a granola bar in the car or purse for when I have to take pill when I'm out. I also have a bottle of water whenever I leave the house. I think I will am also going to try a nasal spray for quick needed relief. Good luck,
Bell

[kzanana]

Thanks for all your input Bell.

[Lupy]

Hi Kzanana,

I was just wondering how the pain has been post botox? It is something my doctors have talked about but I have always resisted. Since it's been 2 years of constant pain now I am begining to consider it so I was just wondering if you have had any relief yet?

Anyway, I hope is IS working fo you!

Lupy

[Denise S]

I was just approved for botox injections for headaches & neck pain.  I go on June 30th.  Would like to know how others are still doing with the treatment.

[bell]

Hi Denise,
How was your botox appointment? Are you getting any relief? How many injections?
I am still getting botox. My Neuro feels this may be a life long ordeal. He doesnt' sound to hopeful that the headaches will get better. i will continue to hope for improvement.
I do really notice a difference getting botox. I am ready to go in after 3 months.
I don't think I have aged in 2 years. Partially because 1/2 of my face doesn't work and the other half I get botox! Crazy.
I also started myofacial release. I do feel better but not a hugh difference in headaches yet. I have gone 4 times. The therapist worked alot in my mouth to release facial muscles. I really feel a difference in my jaw and (AN side)my face does not seem to become swollen as much. I am ready for more.
Good luck and keep us posted,
Bell
 

[Denise S]

Hi Denise,
How was your botox appointment? Are you getting any relief? How many injections?
I am still getting botox. My Neuro feels this may be a life long ordeal. He doesnt' sound to hopeful that the headaches will get better. i will continue to hope for improvement.
I do really notice a difference getting botox. I am ready to go in after 3 months.
I don't think I have aged in 2 years. Partially because 1/2 of my face doesn't work and the other half I get botox! Crazy.
I also started myofacial release. I do feel better but not a hugh difference in headaches yet. I have gone 4 times. The therapist worked alot in my mouth to release facial muscles. I really feel a difference in my jaw and (AN side)my face does not seem to become swollen as much. I am ready for more.
Good luck and keep us posted,
Bell

Hi Bell,
I didn't end up getting the botox that time.  I had gotten an occipital nerve and cervical facet injections last time and it seemed to help 'some' for a few weeks, so the dr. wanted to try that again and hold off on the botox for right now.  I am not sure this round of injections is helping as much.   I go back the end of this month again to see what he thinks then.     

Hmm, not aged in 2 years?  Sounds good! LOL 

Thanks for thinking of me!   
Denise

[kzanana]

I am sorry to report that the Botox has not helped these headaches. After my second round, my
Neurologist said he never really held out much hope that it would. I decided to give it a year to make sure( wishful thinking) and have one more session in December  , but after a short lived relief from the head explosions when I sneeze or cough after the first session only, Botox has been No help.
   Ice seems to be the only thing that helps at all buy it takes a while. My headaches are getting worse now, at least 3-4 a week that put mr down.
     The pressure in the incision area never leaves either. There is a little person with a 2x4continually hitting me in the back of my head and it always feels blown up like a  balloon.

     I tried the Myofacial release therapy and got no relief either.  I am on my own because no doctor seems to have any idea what else to do. I did get a few more ideas tonight after reading Mimi's latest surgery , nerve excisions, so will now check into this . I will not give up, this is
No way to live buy am still very thankful to be live and cancer free.

[Denise S]

Well, I am sorry I don't get back on the forum much.....BUT I did end up having Botox into my occipital area in July.   It DID help me out quite a bit and was amazed at how much my headaches & migraines went down!!!   Basically figured out a lot of my migraines were coming from issues in the occipital area.   

I started getting some of the pains back already at just under 3 months and went back and got more Botox 4 days ago.  This time I am a LOT sorer and not sure what to think.   Going to give it a bit of time though.

[Captain Deb]

I,too,resisted Botox, but because my insurance co would not cover it, but as soon as my disability came through, I got Medicare, which did cover it--Catch-22, huh?

The Botox worked great for me--I was almost 6 yr post-op and still having whopper headaches 4-5 times a month.  I can't remember even having a single migraine headache with the Botox.  I also had injections in the base of my skull and into my trapezius area and it helped with the occipital pain that seemed to be always with me.  After 2 years of injections every 3 months I stopped them, just to see if they were working, or if my body had decided to do more healing.  Today, I have very few episodes of neck pain/occipital headache which leads to a migraine, and if I do I have these Sumavel DosePro needle free generic Immitrex pen thingies which work incredibly well.  I get them free from my GP, who gets them from her drug rep and she specifically saves them for me.  I am really lucky to have her--she is a Nurse-practitioner.  I can occasional get a few from my neurologist who has been taking care of me for the past 8 1/2 years and was my Botox-giver.  Oral triptans have never worked very well for me.

Good Luck to all of you struggling to cope with the Headache Monster!

He can be a real brute at times!!!

Capt Deb