Author |
Topic: Beta Blockers (Read 2843 times) |
|
Out0fTheMist
New Board Newbie
Blessings and Love
Gender: 
Posts: 18
|
 |
Beta Blockers
« on: Dec 26th, 2005, 10:01am » |
 Quote  Modify
|
Hi All,
Hope everyone had a great holiday. Some of you have heard form me on this site concerning my 16 year old daughter Sam and our continuing search for help in her CH's. On our visit to UVA Medical Center, the neurologist asked us about her dad's CH. Sam's are hereditery (documented 4th generation).
David suffered CH's from the time he was 18 or 19. He tried every medicine/treatment in the books. At one time he told me he felt like the worlds biggest guinea pig for meds. Two years befor he died, the doctors placed David on a Beta Blocker (Atenelol) for high blood pressure. David never suffered the "PAIN" of another CH. When a CH hit (yes, he still got all the signs and symptons, just not the pain), you could see the eye swell, his nose would run etc. but the pain of the CH never hit again. The neuro explained that the beta blocker sent a message to the brain and the pain signal was never sent out to the rest of the body ( LOL can't explain this other than this way).
Now the neuro at UVA wants to try this treatment on Sam, even though she does not suffer high blood pressure. Will keep you posted but so far she is almost pain free. On a scale of 1-5 she stays level 1. Compared to before the beta blocker this is huge progress. For almost 6 straight months, Sam has had daily pain levels above 3 to 5's.
Sam like her dad is a chronic sufferer. Her CH's started before 2nd grade. She is now in 10th grade and her social life has been grinded to a halt. Her educational problems all stem from CH. I have hope for her now.
Like her dad I can see the CH hit but no pain. Amazing!
Anyhoooo, wanted to share this. Might want to check with neurologist for Beta Blockers.
Hey, it's worth a try.
Have a great New Year!
Ruth 
|
|
 IP Logged |
|
|
|
djsound
New Board Newbie
I love YaBB 1G - SP1!
Gender: 
Posts: 6
|
|
Re: Beta Blockers
« Reply #1 on: Jan 7th, 2006, 2:28pm » |
Quote Modify
|
Hello,
My Neuro put me on Beat-blockers twent five years ago and it certainly has helped, but I can still get slammed during a cycle. However, I went from a CH everyday (in my twenty's) to an episode every 2-3 years. The problem I ran into with the beta blockers, is that at first they gave me inderal. This slowed my heart and caused an arrythmia probelm later. I then just recently had the arruthmia taken care of by abalation procedure at Cleveland Clinic ($45,000) just glad I had insurance. Once you go on this drug you have to stay on it, but it is much better than a life of CH. Good luck - I think when we die and meet our maker, those with CH will extra points for our time in hell on earth.
|
|
IP Logged |
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
 
Gender:
Posts: 3090
|
|
Re: Beta Blockers
« Reply #2 on: Jan 7th, 2006, 6:00pm » |
Quote Modify
|
I tried several beta blockers and none did anything for me. I am so glad that they have provided you and your family the relief that we all so desperetly seek!
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Out0fTheMist
New Board Newbie
Blessings and Love
Gender:
Posts: 18
|
|
Re: Beta Blockers
« Reply #3 on: Jan 14th, 2006, 9:11am » |
Quote Modify
|
Sam is now off the Beta Blocker. I researched this med and decided at 16 years old, she is a little too young to begin this. After 1 month it did help break her cycle she has been in for 8 months now. But it is not a drug I want her to stay on. It worked for her dad, for Sam it is not an option anymore.
Guess it is back to the drawing board and waiting for her results to the MRI.
Good luck all
love and blessings
Ruth
|
|
IP Logged |
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: Beta Blockers
« Reply #4 on: Jan 14th, 2006, 8:12pm » |
Quote Modify
|
Ruth,
Beta Blockers haven't been found to be of much help to the cluster community. However, Calcium-Channel Blockers like Verapamil have. Don't give up!
Hugs,
Kris
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss