Botox not working
 

Hi,
I am feeling really down right now. I am 19 months into my concussion/PCS - I tried Botox injections last week for the first time and have had no relief from my headaches- today just feeling crappy - I guess I was really hoping that this was going to be the answer.
Has anyone else tried Botox?

Hi,

Sorry you are suffering.

My physiatrist actually mentioned botox for headaches the other week, did say it's so expensive and sometimes does not work.

My accident was 16 months ago, had horrendous headaches/pressure all last summer, seemed to go, except for a few occasions during the winter, and are now back with a vengeance.

Did your Dr say the botox would work pretty much straight away?

Hi Sitke,

Thanks for the response. I actually had to mention the Botox to my doctor after reading about it- my neurologist's constant quote is "after 2 years everything is permanent".
He gave me the Botox - said it would take 7 days to work - if it is going to work - and then said I need at least 3 treatments.
It is quite expensive - luckily I have a plan that covers it for now.
I know how you feel with the headaches - sorry you are suffering as well.
It seems like the pressure/headaches will never go away - my brain feels raw. I also have really bad days after my vision therapy - which is today. Took Tylenol3 - it takes the edge off.

My neuro mentioned it and said that it would work if i was having migraines... but my headaches are not migraines they are related to damage to the brain... so she opted out of doing them.. she did however try a nerve block... didn't work but I hear it works for some.

Thanks for the response Sarah - I wish my neuro would say ANYTHING - I quite agree - my pain is not migraine headaches - even though I have never had a migraine - I just wish they would listen to me and say something intelligent. Very frustrated.....and in pain all the time.

Sorry you are not having any luck!

With everyone's complaints about their neuros I wish I could clone mine for everyone..

Sorry to hear about the botox not working GingerandBella. :(

My physiatrist is pushing for me to try botox and sent me to the neurologist who does botox. The neurologist will do it, but said its 50/50 whether it'll work for me, since my head pain is not typical migraine. He says its very effective for migraines, but he's iffy on whether it will work for me.

I feel a bit suspicious about botox in general. I'm not afraid of needles, that part doesn't bother me, but the actual botox... I don't like the idea of that.

Its also expensive... even with the part that my plan covers, I'll still be out of pocket about $800 per treatment and will need 3 treatments before they can be sure whether it works or not. Seems like a big commitment.

But on the other hand, I've had constant head pain (6/10 is the best it gets - 9/10) for 2.5 years now with not a single moment of relief. I no longer remember what its like to live without head pain, so desperation is also a factor.

I've been sort of keeping botox as a last resort, but I've heard from other people that it doesn't work for them. So frustrating.

I'm so sorry its not working for you... I'll keep my fingers crossed that maybe you'll get a miracle in the next few days. :hug:

Starr

your neurologist is an idiot. if he read any current news he would know that after 2 years not everything is permanent.

Thanks Starr
At least I am not alone - at this point I don't feel like trying anymore fixes - I think that I will just have to learn to live with the pain - at least I am almost retired - I feel sorry for young people who have to live with this.
GB

I could not have said it better.:)
To be totally honest - if I keep asking him questions - he rephrases: "after 108 months - you have what you have" duh!
I wonder if how he would react if someone told him that he could never read again and he would be in pain everyday for the rest of his life.
GB