Back from the Neurologist's Office

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Nicky (coquitlam55)
Veteran Member

Date Joined Jul 2005
Total Posts : 505
   Posted 8/25/2005 9:21 PM (GMT -6)   
Well, I'm back from the neurologist's office. I had 15 - 19 Botox injections. They were incredibly painful but hopefully will work to help my headaches.
We discussed my struggles with Topamax and have decided to stick with it and increase it very slowly. I've been taking 75 mg for 3 weeks without any significant side effects. I'm going to start increasing it by 1/2 tablet starting next week.
We also discussed how many pain killers I've been taking. Unfortunately because the headaches have been so bad I've been taking a lot. In Canada we can get Tylenol 1s over the counter, it has only 8 mg of Codeine, and I thought was better than taking Tylenol 3s. The neurologist has switched me to T3s and we're going to wean off them slowly. I started at 4 today and already have a killer rebound headache.
The neurologist feels that without the analgesics I will have more success with the Topamax and Botox.
I'm so frustrated. I'm lucky if I have one day a week right now without a headache. On the other hand I'm really lucky. I have a great doctor and family support. He takes the time to listen to me and try and solve the problem. I seem to have peaked his attention and he is dedicated to fixing me. Unfortunately our medical system is in such bad shape that he is limited by what he can do.
Coquitlam55 (aka Nicky)
"The world is full of suffering, it is also full of overcoming it." --Helen Keller
I try and remember this each day I have a headache that I'm not sure I can overcome.

Regular Member

Date Joined Jun 2005
Total Posts : 85
   Posted 8/26/2005 9:12 AM (GMT -6)   

Let me know how the botox works. My neurologist tried twice to get my insurance company to approve hem and they would not. I have since lost that job and don't have any insurance. I am trying one more job before I resort to disability. I am hoping I can get insurance, with the new job, that will cover the treatments. Right now I am on Topamax (150 mg/day) and wellbutrin (300mg/day) for depression. I am on too much painkiller too. I have to take percocet to control the pain and hen I have to take it ti prevent rebound headaches. Both my family doctor and neurologist know this is not a good solution but without something for pain I can't even get out of bed. I actually went to the hospital one time and went through detox to get the percocet out of my system. They could not find anything to keep my from getting the headaches daily. I know the wellbutrin helps some but it still can't hide the fact that, with daily migraines and always missing out on family activities because I can't get out of bed, my life sucks!!

Thanks for listening
droll  (AKA Dan)

Nicky (coquitlam55)
Veteran Member

Date Joined Jul 2005
Total Posts : 505
   Posted 8/26/2005 11:42 AM (GMT -6)   
:-)  Hi Dan,
I know how you feel. I'm quite happy to stop taking pain killers but I need something when the pain hits, especially when it hits everyday.
My rebound headache started about 2:00 pm yesterday and I'm ready to rip my hair out. I woke up this morning and my eyes are even hurting. The dull throbbing is enought to drive me insane.
The jury is still out on the Botox. The first time I think it worked, the second time it didn't and I think it might be working already, though the doctor would probably tell that's not true. I have been suffering from bad headaches for the past month. As soon as the initial pain from the Botox was gone the underlying headache I had been suffering from was gone. It was gone until the rebound started. Even though I have a rebound I don't have a migraine. The relief is nice.
My insurance from my last job did not cover Botox but my husband's insurance did. I have since changed jobs and now have the same insurance company as my husband. As his company only covers 80% of the cost I'm hoping my coverage will cover the rest.
My visit to the neurologist prompted me to write a letter to our Local and Federal Health Ministers. My neurologist is now charging a $100 fee for the Botox office visit. If its a hardship he won't but because Botox isn't an approved benefit by the government they won't pay for it. I also learned that as part of Canada's wonderful social medical system my neurologist is paid $145 the first time I go to see him and $36 for each 3 month visit after that. If I don't see him for more than 6 months then he gets the $145 again. My doctor is touted to be the best neurologist in BC in the treatment of migraines yet as far as the government is concerned he is only worth $36. He spent at least half an hour if not 45 minutes with me on Wednesday that means he's making $72 / hour at the most on return visits. My car spends more time with my mechanic when I get an oil change and I the dealership gets more money for that. It's disgusting. Sorry, I ranted.
Back to you. I feel your struggle. I spent six months on disability and though you don't have to get up to go to work it can be demoralizing. On the other hand it gives you a break to get a routine going, get some pain management in place and spend some quality time with your family without other worries.
I have a new job with significanlty less responsibility making significantly less money. I find that hard to deal with sometimes but its what I have to do to have any quality of life. I'm also a student but I do it very slowly. I see a psychologist who specializes in chronic pain and she helps me deal with the pain, the guilt, and the frustration. She helps me see that life doesn't suck all the time. I have learned to be proud of the things that I can do, like getting out of bed each day, making it to work and doing some things with my family. Try not to feel guilty about the things you miss. You're doing your best, be proud of that. Living with chronic pain is something to be proud of because that does suck!! yeah
Good luck!
Coquitlam55 (aka Nicky)
"The world is full of suffering, it is also full of overcoming it." --Helen Keller
I try and remember this each day I have a headache that I'm not sure I can overcome.

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