Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Our answer to being chronic
        
(Message started by: kareno on Jul 18^th, 2004, 1:23pm)

Title: Our answer to being chronic
Post by kareno on Jul 18^th, 2004, 1:23pm

My daughter Shelby has been chronic for 3 years now. I have posted several times in the past about how CH has devestiated her life and all who love her.
We went to 5 nero's, tried every preventive and abortive drug on the market. We even had the morphine pops at home, nothing helped. I felt that she would not survive another year like the prior 2 yrs. I told her nero something has to change or she would end up dead. He wanted to try botox, we contacted our insurance co. who first refused to pay for it so I appealed their decision along with the help of 4 nero's and her doctors. I also let them know it would be less expensive that all the drugs, hospital stays and all the other doc's she was seeing due to complication with the drugs. They finialy agreed to pay. She has now been receiveing botox every 8 to 12 weeks, she is completely pain free during the time between the injections. It has saved her life. She is now engaged and getting married in Sept. She endured one the worst pain know to man for over 2 years every day and night. She was getting 3 to 8 HA's per day. It was something no one could beleive. Thank god for her nero. If you have any questions, please ask, this has truly been a miricle for her.

Title: Re: Our answer to being chronic
Post by Samantha_Smith on Jul 18^th, 2004, 3:39pm

Awesome!!! How strange...our stories are sort of similar. I tried all the drugs out there and nothing worked. Doc's just kept giving me more and more narcotics (OxyContin 3 times a day, 100 mcg Fentanyl Patch every 2 days) but nothing really worked. My neuro was hestitant to use Botox because I can get CH on either side of my face but he was frustrated because I was using more and more narcotics. We tried the Botox and finally I stopped going up and up on the narcotics. We have to travel every 3 months from VT to Boston but it is totally worth it. I love my neuro!!! BTW I was chronic also until I got the Botox injections. (I still have to use the Fentanyl Patch unfortunately.)

Some people have tried Botox without success. Some insurance companies won't cover it and it is extremely expensive. Not all neuros are qualified to give Botox shots either. I swear by Botox it has saved my life and made it worth living. I was married in May of 2003 to a cancer survivor.

I'm not an expert and I don't know all the details of Shelby's story but I was told by my neuro and others it is dangerous to inject Botox more than every 3 months (or 12 weeks).

I love my neuro because he takes the "follow the pain approach" vs the "standard injection site" approach to Botox injections. For instance he was giving me alot on the right side of my face but for the past 3 months I've been hit pretty bad on the left side near my jaw. When I saw him 2 weeks ago I explained the pain had changed and he rearranged the shots accordingly. The pain in my left jaw is virtually gone.

Some people on this board are afraid to use Botox ( and rightfully so) because there has been some bad press about Botox paralyzing people among other horror stories.

I'm happy to hear that Shelby found her answer to being chronic. Let's hope that the rest of the chronics on the board find their answer also. Samantha

Title: Re: Our answer to being chronic
Post by Ronny on Jul 18^th, 2004, 4:51pm

Man, that must be so hard for your daughter. I hope she has a good marriage and a PF life.

Kind Regards,
Ronny.

Title: Re: Our answer to being chronic
Post by don on Jul 18^th, 2004, 6:15pm

What a confusing thread.

Quote:

I tried all the drugs out there and nothing worked. Doc's just kept giving me more and more narcotics (OxyContin 3 times a day, 100 mcg Fentanyl Patch every 2 days) but nothing really worked.

You used all the drugs out there except those that are effective for CH? Is your Botox neuro the same guy prescribing all the narcs?

Quote:

For instance he was giving me alot on the right side of my face but for the past 3 months I've been hit pretty bad on the left side near my jaw.

Is jaw pain the only area of pain? Thats hardly CH.

Quote:

The pain in my left jaw is virtually gone.

Thats good but what about all the other symptoms of CH?
Jaw pain is the least of my worries when I have an attack.

Quote:

Some people have tried Botox without success.

I think its fair to say that most people have had no success with Botox for CH.

Title: Re: Our answer to being chronic
Post by UN_SOLVED on Jul 18^th, 2004, 9:18pm

on 07/18/04 at 15:39:48, Samantha_Smith wrote:

OxyContin 3 times a day, 100 mcg Fentanyl Patch every 2 days

Q What kind of doc would prescribe these meds for CH ?

A A doc who knows nothing about CH.

Unsolved

PS...Gotta agree w/ don again. He must be one smart motherf&*ker !! ;;D

on 07/18/04 at 18:15:18, don wrote:

Jaw pain is the least of my worries when I have an attack.

I think its fair to say that most people have had no success with Botox for CH.

Title: Re: Our answer to being chronic
Post by don on Jul 18^th, 2004, 9:50pm

You keep agreeing with me and your rep is going to be in the dumper.

I'll say it first and save about 4000 people the trouble

" smart (ass) motherf&@ker"

Title: Re: Our answer to being chronic
Post by UN_SOLVED on Jul 18^th, 2004, 10:07pm

LMAO don !!!

Unsolved

Title: Re: Our answer to being chronic
Post by Samantha_Smith on Jul 18^th, 2004, 11:40pm

Don and Unsolved--

I'm sorry I left you confused. I am so very hurt by your comments of "that's hardly a CH" and your doc "knows nothing about CH." Your posts don't even dignify a reply in order for me to clear up the confusion. Perhaps in the future you should ask questions and clarify assumptions before you post thoughtless remarks and insults. I'm so very, very sad that you chose to attack rather than ask. Your behavior illustrates why people leave this board and do not return. Samantha

Title: Re: Our answer to being chronic
Post by notseinfeld on Jul 19^th, 2004, 1:14am

I think I hear bacon cooking.

Title: Re: Our answer to being chronic
Post by don on Jul 19^th, 2004, 6:25am

Quote:

Perhaps in the future you should ask questions and clarify assumptions before you post thoughtless remarks and insults

Perhaps you should be clearer in the first place and save us the trouble of responding to you at all.

Quote:

effective for CH?

Quote:

prescribing all the narcs?

Quote:

only area of pain?

Quote:

other symptoms of CH?

All these years I thought those squiggly things were question marks. Guess I was wrong.

Title: Re: Our answer to being chronic
Post by pubgirl on Jul 19^th, 2004, 6:44am

Samantha

Trying to be objective and fair here. I read your post carefully, and it certainly doesn't read like a vascular headache or pain, nor does it read as if you have been prescribed CH treatments. It is impossible to tell from Kareno's post about Shelby what her symptoms or failed treatments were.

The words you use and the treatments mentioned read more like facial/neurological pain such as TN i.e neuralgia rather than cephalgia. To be blunt, it therefore doesn't read like a CH sufferer at all.
Neurological pain is far more likely to respond to Botox treatment than CH is as it 'paralyses' muscles and nerves in the area treated.

I think it is important that we have a balanced view with full information when anyone on here recommends unorthodox or untested treatments. Ch sufferers are desperate people often and may well try anything if someone else says it works.
In truth, almost every CH sufferer who has tried Botox has reported no beneficial effect whatsoever, and it doesn't even figure on anyone's plans for future research. No-one even knows what the long term effects are of injecting poison into our bodies as Botox hasn't even had one generation of use yet.

That is why people here are sceptical and often aggressive when a 'wonder cure' is posted. We only mean to protect people from non-Ch sufferers claiming cures which can often be expensive, useless or even dangerous.

Wendy

Title: Re: Our answer to being chronic
Post by mustang on Jul 19^th, 2004, 8:56am

I agree with pubgirl. Pain killers and narc. have never helped me. We really don't mean to be mean or uncaring
but what you described is not Ch,at least not the way I get mine. Maybe you should read some of the other threads and see what the real pain of CH's are.

Sorry about your pain.
Mustang

Title: Re: Our answer to being chronic
Post by Samantha_Smith on Jul 19^th, 2004, 10:43am

I'm just too tired to fight this one and I've seen it happen to too many other people. Samantha

Title: Re: Our answer to being chronic
Post by pubgirl on Jul 19^th, 2004, 1:07pm

This isn't a fight Samantha and it's a shame you see it as that rather than being happy to explain and stop the confusion.

No argument with you here, just trying to gain clarity about what exactly is being cured by the Botox. Is that so wrong?
Surely that's what this section of the board is about? [smiley=huh.gif]- Understanding specific cluster headache issues

Wendy

Title: Re: Our answer to being chronic
Post by notseinfeld on Jul 19^th, 2004, 10:32pm

Nahright gang gotta set the wheel straight.

Samantha has been an indefatigable warrior in our *collective* fight with the beast and I'm certain that a review of her posts would illuminate such a position. I think she even directly supported you un_solved during a time when hitting your head against the wall wasn't even helping. Her pain, like yours and mine, is nasty and all too real.

There's not a favor in the world I wouldn't do for anyone who posts on this thread and most any other here at ch.com. The beast is just to tough to have to worry about expending energy with infighting. Let's put this to bed.