Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
newbies (Read 2457 times)
johnnysrock
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 17
Santa Rosa CA
Gender: female
newbies
Jun 15th, 2012 at 9:17pm
 
Newbies here!!!
My husband has been suffering since 1994, undiagnosed by the medical community until now. With my help and research about cluster headaches I made the diagnosis, and yesterday it was confirmed by a neurologist. Since we are newbies to the world of cluster headaches (not by any means newbies to the endless bouts of pain and misery) we are here for support and help in hearing what works for others who suffer from the same nightmare. I have watched my man suffer for hours at a time, doctors treating him for sinus infections, pulled teeth because they thought it would be the solution, give him prescription after prescription for pain meds that do nothing to relieve his pain, and at times look at him as though he was crazy, Johnny will be relieved to know that he is not alone, not that we wish this horrible headache on anyone. For years he has been trying to make those around him understand, and realize that this is not all in his head. We are reaching out to those others who are in the same boat.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: newbies
Reply #1 - Jun 16th, 2012 at 9:52am
 
Welcome to the board, and bless your heart gor doing all of the footwork for johnny. Try and get him on the board as nohting compares with inter-acting with other CH'ers!

Is he working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "anti inflammatory regimen and survey" It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it. Best thing is it's a healthy daily regimen for those who DON"T hsave CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if he is a CH’er, knowledge is his best ally. We’ll help you all we can.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
johnnysrock
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 17
Santa Rosa CA
Gender: female
Re: newbies
Reply #2 - Jun 16th, 2012 at 11:20am
 
Thanks Joe,
I appreciate your info, we saw the neuro yesterday in the ER and have an office visit on the 26th. Heis doing a Prednisone treatment now,  has the imitrex nasal spray and is using vera.  We do not have O2 yet but will get it on the office visit.  I love this website, as it is very informative and has given me the strength to move forward. I am keeping a log of info on Johnnys headaches to share with the neuro, trackng his medications and trying as hard as I can to be his rock when all else fails him.  He is a bit skeptical that this is his problem, wants to lean more toward some type of problem with the clamps is his neck from when he broke it.  However I am a firm believer that he has CH.  Right now we are detoxing him from all the useless pain medication he has been taking for the past month,  trying to flush them out of his system with lots of water and vitamins.  I am prepared to go the distance with him and find relief and remission.  I am so happy I found this website. Cheesy
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: newbies
Reply #3 - Jun 16th, 2012 at 11:39am
 
Right now we are detoxing him from all the useless pain medication he has been taking for the past month,  trying to flush them out of his system with lots of water and vitamins.  I am prepared to go the distance with him and find relief and remission.  I am so happy I found this website

Smartest thing he could do for himself. They do little to alleviate the pain and the risk of rebound headaches is very high. You've got a great attitude attacking this thing head on, he's a lucky man to have you in his corner! Wink

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
johnnysrock
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 17
Santa Rosa CA
Gender: female
Re: newbies
Reply #4 - Jun 16th, 2012 at 2:26pm
 
I read up on the anti-inflammatory regimen, and am willing to try as it sounds promising.  I went out and got a good daily multi vitamin, fish oil and Vit D, came home and made Johnny take his daily dose.  I think he is skeptical of the relief these things may provide for him, as he has been going through this so long, but he is being a good sport and humoring me with  every suggestion I make.  We are on the water x3 thing too, I keep reminding him to drink and yes he is becoming very intimate with the commode.  The pressure he has in his forehead has yet to become a full blown headache today.  Mainly he is exhausted from the last four days of excruciating pain and no sleep, I will let him rest for as long as he can.  Again thank you for your support as this whole thing has been trying for me.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!